Day Seven, June 14^th, my birthday. 

I’m alive, but still feeling certain that my life will end suddenly at any moment. It occurred to me that the time of my birth might coincide with the time of my death. 

The day seems interminable and way too hot. I barely notice my surroundings. My energy is sinking and my body is swollen, especially my legs. I am going through the motions of trying to act in a way that won’t cause concern or alarm among my fellow rafters. Only Lenya has a partial sense of the gravity of my condition, but she has no awareness of how imminently close to death I am.

In the late afternoon, we beached our boats and set up camp. Lenya set up my tent as I sat on a rock in the shade and watched with detachment. She did most of the work that normally we would have shared, like hauling heavy boxes and bags out of the boat, securing the boat, preparing the campsite, setting up, and getting organized.

As I looked around, I noticed that everyone seemed to be focused on setting up the kitchen area with unusual haste. It looked like each person had a specific task they were focusing on in regard to the food preparation. Something about the way the rafters carried out the dinner routine this particular evening seemed different from the usual pattern and pace of the preparations.

Unbeknownst to me—well before the trip departure—Lenya had told her rafting buddies about my birthday that would fall on Day Seven, the day before take-out at Clay Hills the following morning. The group had brainstormed what they could do to mark the occasion—something humorous and creative to regale me that evening.

After one of the rafters lined up the camp chairs to form a semi circle in the kitchen area, we all sat down. With wine in their mugs, my fellow rafters drank a toast to me. I held up my mug of water.

The head chef had prepared an elaborate, multi-course gourmet dinner, and even included some fresh vegetables that he had set aside for the occasion. Lenya had prepared a healthy, sugar-free chocolate cake.

When everyone had finished eating dinner, as if on cue, all the rafters mysteriously disappeared. After a few minutes, they reappeared in outrageous costumes. One woman dressed as a princess in her prom dress from high school. She had a crown on her head with blinking lights and glasses with flashing lights. The performers had sparklers, party hats, horns, and glittery substances. They sang songs, recited poems, and did humorous skits. I made an effort to join in the laughter even though I could not fully appreciate all the fun and foolishness enacted in my honor.

The scene in front of me felt surreal, like a Fellini movie, as though I was dreaming with my eyes open. The woman in her prom dress placed her crown with blinking lights on my head while I sat in my chair with a half-hearted smile pasted on my face, trying to act normal, while the lights blinked on and off on my head in the encroaching darkness.

I whispered to Lenya that I couldn’t stay upright much longer. She urged me to go back to my tent and lie down. I thanked everyone for the birthday performance and said that I wasn’t feeling totally myself and needed to go to bed. I walked slowly to my tent.

As I lay in the tent, I knew with certainty that I would die in my sleeping bag during the night. I imagined Lenya cheerily calling out to me in the morning, and, not hearing an answer, would walk over and pop her head in the tent and find me dead. I felt sorry that Lenya would have to face this shock—not to mention the logistics of dealing with a dead body on a raft trip.

I felt bad for the whole group that my death would cause them so much trouble. But at least they wouldn’t have very far to transport the body. The take-out place was only a couple of miles downriver and then the driver would meet the group and drive them and the body back to the put-in place where our cars were parked. When I tried to think what they would do with the dead body after they got back to Santa Fe, my mind went blank.

Before I knew it, morning had come. I was swollen, exhausted, short of breath and weak, but alive. It would only be a few more hours and then we’d be off the river.

At the take-out at Clay Hills, I lay down in one of the waiting vans as my fellow rafters packed the gear up and stashed it in the vehicles. At last we departed and headed back to our cars at the put-in place at Sand Island and from there we were homeward bound.

As we drove home, I was only dimly aware of the strikingly beautiful land we drove through, some of which was Navajoland and very familiar to me. My focus remained inward as I tried to sort out the constellation of symptoms to get a sense of what exactly was happening to me. I noticed that my legs were massively swollen all the way up into my thighs and concluded that I was in congestive heart failure. I also felt intense pain and pressure in my head. 

Thyroid storm 

By a force of will I managed to drive myself home from Lenya’s house where our driver dropped us off. I staggered into my house and collapsed on the couch, too exhausted to unpack the car. Being at home provided some psychological relief, but no physical relief. My heart continued to race intermittently, even though I was no longer in the sun and overheated. My blood pressure reading on the monitor showed abnormally high numbers.

As I lay on the couch with my swollen legs elevated, trying to figure out what had happened, thoughts of hyperthyroidism came to mind, a condition that can cause a racing heart with irregular rhythm, hypertension, heat intolerance, diarrhea, insomnia and anxiety, all of which I had been experiencing. But why would this happen to my thyroid?

The full blood panel that I had ordered on myself at the lab before I left on my trip waited for me in my fax machine. The lab tests revealed elevated antibodies to every organ that I had tested, including the thyroid gland. My thyroid hormone levels were extremely high—higher than I had ever seen in my 30 years of practicing medicine—as were the levels of anti-thyroid antibodies. The thyroid antibodies had been actively attacking my thyroid gland, resulting in a massive outpouring of thyroid hormones, which created a similar condition as if I had drunk dozens of cups of coffee. I was in a state of severe thyrotoxicosis, also known as a “thyroid storm.”

Here is a description from a medical dictionary: “Thyroid storm is an acute, life-threatening, hyper-metabolic state induced by excessive release of thyroid hormones. The clinical presentation includes fever, tachycardia, hypertension, and neurological and GI abnormalities. Hypertension may be followed by congestive heart failure that is associated with hypotension and shock. Because thyroid storm is almost invariably fatal if left untreated, rapid diagnosis and aggressive treatment are critical.” The cause of death from a fatal thyroid storm is usually due to heart attack or stroke.

No wonder I was so certain that I was going to die on the river trip of either a heart attack or a hemorrhagic stroke. In medical school I learned that no one with severe thyrotoxicosis survives unless they get treatment immediately. It’s not clear to me why I didn’t die in the wilderness.

In any case, here I was, still alive and feeling awful beyond words. It was time to take some action to get myself out of imminent danger.

My first goal was to tend to my agitated and over-stimulated heart. I prescribed myself a beta-blocker medication to lower my blood pressure and to block the tachycardia before it caused a heart attack or a stroke from a ruptured blood vessel in my brain.

The molecules of the beta-blocker blood pressure medicine sit in the receptor sites in the heart and block both the heart’s ability to beat fast and also its ability to beat with great force, resulting in lower blood pressure and lower heart rate.

I dragged myself into the car and drove to the nearest drugstore. The pharmacist knew me well since I had spoken with him on the phone many times over the years regarding patients’ prescriptions. As I held onto the counter for support, I told him that I needed the beta-blocker urgently—before I passed out right there in his pharmacy from the severe tachycardia. Within seconds, he gave me a beta-blocker pill and a glass of water, followed by a full bottle of the pills to take home. He asked if he could call an ambulance. I declined the offer, not having the least desire to go the emergency room.

After the beta-blocker took effect and my heart calmed down, I needed to take the next step toward reducing the imminent danger. I returned to the local lab to get my blood drawn again. The lab agreed to ship the blood specimen overnight to the lab in Germany for Melisa immune testing that I had researched before the raft trip. I had a strong suspicion that the culprit lurked inside my leg.

In case I might have overlooked something in my investigation and self-treatment, I thought it would be prudent to make an appointment with an endocrinologist. At that time Santa Fe had an endocrinologist, a Russian woman who had recently moved to Santa Fe, who had a good reputation for being reasonable in her approach to treating endocrine disorders. She told me to come to her office immediately.

Mara listened to my history, reviewed my lab work, examined my swollen thyroid gland at the base of my neck and expressed amazement that I was still alive.

Although Grave’s disease is known to occasionally cause thyroid storms, my lab work revealed that I did not have Grave’s disease. Mara agreed that I had a reactive thyroiditis—inflammation of the thyroid gland due to being attacked by extremely high levels of autoantibodies. Surprisingly, she agreed with my speculation that my immune system was reacting to the nickel in the stainless steel plate in my leg. I harbored a time bomb in my leg that was destroying my life.

Mara reviewed with me the three choices I had for treatment of thyrotoxicosis—complete surgical removal of the thyroid gland, or destruction of the gland by injection of radioactive iodine, or symptomatic treatment of the hypertension and the rapid heart rate using beta-blocker medication—exactly what I had prescribed for myself.

With the beta-blocker, I would be able to buy time until the cause of the thyroid storm could be determined, although I knew with near certainty that it was related to the metal plate. I was determined to get the metal out of my leg. The destruction from abnormal antibody production had to be stopped without delay.

Within two days, the results of the Melisa testing from the lab in Germany returned and, not surprisingly, showed extreme reactivity to the nickel by my antibody-producing lymphocytes.

At last I had the evidence I needed. I scheduled another appointment with the orthopedic surgeon. When I showed him the results of the test, he said that he had never heard of the Melisa test and didn’t know what the results meant. I explained. He was dubious. He repeated his reluctance to take out the plate, but did admit that my leg would probably do all right without it. He said that the leg might be more susceptible to fracture until enough time had passed to fill in the holes left by the screws.

I said, “I don’t care if you don’t believe me that there is a relationship between the nickel in the stainless steel plate and the thyroid storm I experienced. I just want the plate taken out as soon as possible before it kills me.”

The surgeon relented. He responded, “I will take it out, since you insist, Erica. But I really don’t think it’s going to make any difference. I don’t want you to get your hopes up too much with unrealistic expectations.”

The surgeon scheduled the surgery for two weeks after my office visit with him, near the end of the summer of 2008. The plate removal went smoothly. The surgeon wrapped up the plate and screws and gave them to me upon my request. The plate looked large to me as I held it in my hand and pondered this metallic culprit that had derailed the life I had known.

More Disturbing Symptoms

I was back on crutches for three weeks. I exercised with caution, not wanting to stress the bones before the screw holes had a chance to fill in with minerals—estimated to take about two months.

I felt a big sense of relief to have the metal out of my body.

After two or three weeks passed, I returned to the local lab and rechecked my antibody panel. On the original test, I had been making autoantibodies to every organ and tissue that was tested, including antibodies to my heart, components of the nervous system, the joints, and the cell nucleus where the DNA resides in every cell in the body.

When the results of the repeat testing came back, I was excited to see that the autoantibody levels had returned to normal, including the anti-thyroid antibodies. It was amazing to me that the antibody levels dropped in such a short amount of time after the surgeon removed the metal—direct confirmation of the role played by the nickel in the stainless steel that caused my immune system to go awry and attack my organs. But I wondered how much damage had been done while the autoantibodies were elevated. I would eventually find out.

The swelling in my thyroid gland gradually subsided. And the abnormal heart rate and rhythm became less frequent over the ensuing months. The blood pressure started to come down as well, but did not reach pre-thyroid storm levels.

Although the swelling in my legs eventually went down, my heart appeared to have been weakened by the stress of the thyroid storm. Just walking up the stairs in my house caused me to become short of breath and feel faint. I designed my own little cardiac rehab program, walking up and down the stairs in my house and walking along the river, gradually increasing the demands on the heart over the following year.

After the swelling went down in my thyroid gland, I rechecked my thyroid hormone levels with a blood test. The autoantibodies had damaged my thyroid gland and left me with an underactive thyroid. From massive outpouring of thyroid hormones due to the hyperthyroid condition, I was now mildly hypothyroid and needed to take a low dose of thyroid hormone.

A new symptom had appeared shortly after the raft trip ended—persistent pressure in my head. Although I had never experienced sinus problems before, I had what I thought was sinus pressure behind my upper nose and eyes. Sometimes the pressure was so uncomfortable, I felt nauseated and had to do deep, slow breathing to manage the pain. Tylenol or ibuprofen brought little or no relief. Lying down made the pressure even more intense. I noticed that the pressure felt worse in the morning, then diminished toward the evening. It was a puzzling pattern that didn’t make sense to me.

I also noted that my vision was so blurry in the mornings that I could hardly see. I had to wait a couple of hours before I could do paperwork. I assumed that the blurry vision was from swelling of the corneas, a condition that can distort the refraction of the light rays coming into the eyes. But why were the corneas swollen? The swelling around my eyes was puzzling as well. I planned to get x-rays of my sinuses to see what was going on. Before I got a chance to do that, yet another frightening symptom appeared.

While at the dentist’s office getting a crown repaired, I developed a severe migraine headache that subsided after taking a narcotic pain medication that the dentist offered me. While driving home in the fast-moving traffic on St. Francis drive, I suddenly could not see clearly. My vision became massively distorted. Fortunately I was in the right lane and managed to steer the car to the side of the road. I wondered if I was having a visual migraine. They can give the impression that one is having a stroke in the visual part of the brain.

I waited for the visual disturbance to pass. It never passed.

From that day forward I had a severe case of double vision (diplopia), with one of the images up high, off to the left and the other down low to the right. I was without a cell phone to call for help. I inched back into the stream of traffic and drove home in a state of panic, with one eye closed, feeling seasick and nauseated, as though I had vertigo.

A friend drove me to the ophthalmologist’s office. Dr. Soloway examined me and confirmed that my eyeballs were not working together. We reviewed some of the possible causes. My blood pressure medicine had been switched from the beta-blocker that had overly blocked my heart rate to around 40 beats per minute, to Lisinopril that works by a different mechanism and does not affect the heart rate while it lowers the blood pressure. Dr. Soloway read in the manual of drug side effects that, in rare cases, the Lisinopril can cause double vision. He read that the double vision will resolve once the Lisinopril is stopped. He suggested I stop the Lisinopril for a few days and switch back to the beta-blocker and see if the double vision returned to normal. Hope arose in me, but didn’t last long.

The ticking time bomb had moved from my leg to the inside of my head. Now that my vision was damaged, what would be next?