I’m a pill poppin’ animal (not like Lil Wayne) who never leaves the house without her medication. Life wasn’t always like this, but since I was a child I’ve been sickly. Being born with pneumonia with a slim chance of survival, I’ve always been in and out of hospitals. Throughout my childhood I had been to countless doctors due to excruciating stomach pains, asthma, and severe allergies. I had my tonsil and adenoids removed and as I got older have had countless surgeries: foot surgery twice, appendectomy, myomectomy and thyroidectomy to list a few. Each surgery came with its own version of complications. For instance, after I had the tonsillectomy, my throat got really swollen and I had a severe allergic reaction to codeine which landed me back in the hospital. There was always something wrong with me, but on the outside I appeared healthy. In college, the school nurse told me to make sure I got a job with good insurance because I was going to need it. Boy was she right.
As the years progressed so did my illnesses. In 2008, I was finally diagnosed with Graves’ Disease, a form of hyperthyroidism. The endocrinologist who diagnosed it called me one evening after reviewing my lab results to tell me to stop exercising immediately because I could have a stroke. I had just turned 29 years old. He started me on Methimazole right away to treat my Graves’ disease. Within a couple of months, my body began to reject the medication and allergic reactions ensued. I was then told to take Claritin to combat the skin irritations to the medication. Over time, it didn’t work and the allergic reactions worsened. I was prescribed PTU, another thyroid medication which worked okay but not at as well as the first. My endocrinologist suggested removing my thyroid or having it inactivated with radioactive iodine but I had read horror stories where patients couldn’t get their medication right and were struggling in their daily lives. I relayed this to him and he told me not to worry because the medication was calculated according to body weight. He gave me the textbook answer, but I still didn’t trust it and told him no surgery or radioactive treatment. I should have stuck to my gut.
But the days and nights grew to be so excruciating. I was so tired that I would go to my car and take short naps during lunch. I simply could not make it through the day. I would get so hot and sweaty, then I would be ridiculously cold. It was a nightmare. My mood would change like the street lights. People thought I was crazy. Hell, I thought I was crazy. I was so sick I called the doctor and asked what I needed to do and of course he replied with surgery or radioactive iodine. I didn’t want either but I was desperate. I put off the thyroid surgery for three years. Finally, I decided to have it removed on April 16, 2012. I will never forget that date because my life really took a turn for the worse. I just wanted to be fixed and he told me how much better I would be with it removed, except that’s not how it turned out. I felt like I was dying afterward.
By the summer of 2012, it had really gotten bad. I had accepted a National Endowment for Humanities grant to go study African-American Political and Social History in Chicago that summer prior to the surgery. I was elated that I was chosen. I got to meet Carol Moseley Braun, the first African American woman to be elected to the U.S. Senate. When I inquired with the doctors about going to Chicago prior to the surgery, I received a thumbs up and was told that my body should be adjusted by then. Within a week of being discharged after the surgery I was in the emergency room. I had a severe allergic reaction to the dye in my new medication, Synthroid. As time passed, I felt horribly. It felt as if something was crawling all over my body all the time. I remember being so depressed that I would break down and couldn’t function. I called the doctor to describe my symptoms only to be told that my lab results were fine and maybe I should go see a psychiatrist. Intermittently throughout the years when doctors couldn’t figure out what was wrong, a psychiatrist was suggested. My current doctor and I recently talked about this and he said when a patient doesn’t meet the textbook response that is the response they are taught to say in medical school.
Because I wanted to be healed and figure out what was wrong, I entertained the doctors and saw a few throughout the years but they could never figure out what was wrong. One doctor years ago prescribed a really low dose of lithium to help with my mood, but I got so ill that I ended up in the emergency room and was given Benadryl to stop the dreadful reaction. I suffered and suffered throughout the years and tried various herbal supplements to no avail. Eventually, I stopped seeing my endocrinologist and went to my general practitioner for help. There was no way that I would continue living life in that manner. Thankfully my primary doctor agreed to treat me and we tried Nature-Throid, a combination of T3 and T4 thyroid hormones. The Synthroid that I was on only contained T4 because a patient’s body was supposed to convert the T4 into T3, but I didn’t convert well which came as no surprise given my medical history.
The Nature-Throid provided some relief but things were still awful. I would come home from work ready to pull my hair out some days but I would manage to pull myself together and go about my daily routine. Sometimes I’d break down in the car and call my mother, but she didn’t know how to help me. I made it through the days because I had to survive. In 2013, I had gone to see a homeopathic doctor who prescribed several supplements, B – Supreme being one of them. It would help some days, but other days it was as if someone was crawling and scratching my internal organs. Finally in 2014, I got the answer that I was looking for and it wasn’t that I was psychotic. One day I was reading an article about B deficiencies and scheduled an appointment with a doctor in NY where I was residing. I asked her to test me for B deficiencies and it turned out that I was severely deficient in folic acid. When I asked her why or how, she had no explanation but gave me a prescription for folic acid. Upon taking it, I got severe anxiety, heart palpitations, and shortness of breath. I felt like I was having a heart attack. When I came back to my hometown, I went to see my general practitioner and explained the symptoms.
At this point he was working (thank God for continuing education for doctors) with a naturopathic doctor who told him about MTHFR. He ordered genetic testing and found the cause of the severe folic acid deficiency. I had the MTHFR genetic mutation and was compound heterozygous. This mutation caused methylation issues that prevented my body from digesting food and functioning properly. Now I take 5-6 tablets of Methylfolate L-5-MTHF 1000 mcg, a natural form of folic acid, throughout the day. It took time for my body to adjust but it helps with daily functioning. I don’t absorb nutrients from my food properly due to leaky gut, a common issue in people who have autoimmune illnesses. To compensate, I am a pill poppin’ animal. I take supplements all day long. Sometimes I forget because it’s so much to remember but my body is an alarm. If the time has surpassed, I get a headache or extreme exhaustion.
Each morning, I take 137 mcg of Tirosint and one hour later I take 15 mcg of Liothyronine (T3), the first of three doses. Then 45 minutes later, I take B-Complex Plus with 200 mcg of Seleno-Methionine. An hour later, I take 27 mg of Ferrochel and 500 mg of Magnesium. I am supposed to wait up to four hours after taking thyroid medicine before taking iron or magnesium, but my body starts to fall apart. I’ve tried waiting and the longest my body will tolerate is two hours before massive headaches begin. About 30 minutes later, I take two folates. I also take Alpha Lipoic Acid 100 mg, on occasion Betaine HCI 648 mg for digestive support, and Omega 3 Fatty Acids, 1100 mg. Before I know it, it’s time to take my second dose of T3, 20 mcg. My doctor told me it’s as if my body is not even using the full dose of T3 because a traditional patient would not tolerate so much. But upon examination, I show no tremors or symptoms of hyperthyroidism. I add two more folates and 1000 mg of L-lysine in between the second and third dose of T3.
Three hours later, I take 15 mcg of T3 and within an hour one more folate. This will usually allow me to make it to 5 pm, but I am exhausted. I come home, make coffee and usually end up taking one more folate to total six for the day. I’ve experimented with not taking all of the supplements but the side effects are horrific. I get massive headaches, fatigued, and a heavy appetite because I don’t absorb nutrients from my food properly. It’s crazy because two years ago, I took none of these supplements, but felt like I was losing my mind. I was always trying an herbal remedy because I knew something was wrong. One year, I tried Cat’s Claw and almost lost my mind. It made me extremely irritable. I didn’t want to be around people or myself. I later found out that people with certain autoimmune illnesses shouldn’t take it. I have learned to adapt and be happy that I am alive and feeling better, but it can be a nuisance having to travel with pills and water all the time. Planning a vacation is cumbersome because I have to pack enough pills for the duration of the trip.
I’m a pill poppin’ animal all day, even at work. One day a student approached my desk and saw my pill-box that contained all my supplements and my Liothyronine (T3). He said, “Oh my God, are you okay?” He was really concerned and that’s when I explained to him that I had an autoimmune illness. I had to explain to the class that with an autoimmune illness your body recognizes your own healthy cells as foreign and attacks them. I went on to explain how someone can suffer from an autoimmune illness and not look like the stereotypical debilitating sick person.
My journey to recovery is not over. Even though I feel better, my system is not completely healed. Some days and moments in the day, I feel horribly and there’s not much I can do. My doctor said that my gut needs to be healed in order to improve my well-being. My next move is to take Physician Elemental Diet. He suggested two weeks with no food and just the amino acids and vitamins in the powder mixed with water, which is difficult for many reasons. It’s $47 daily and I like to eat. Although I have healthy eating habits, I enjoy food. I bought a two-day supply to start. Wish me luck. The struggle is real.