My Chronic Illness Journey, From Diagnosis to Finding the Right Treatment
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I was diagnosed with Hashimoto’s disease in September of 2015, but my journey begins before then. Two years and two months to be exact.
What I remember the most is the feeling of being tired. Not “I Need a 15 Minute Catnap” tired, but extreme fatigue from basically walking and existing. I took a trip to Boston in July 2013. I had fun, but I yearned to lie down the entire time. I found my eyes closing as we toured Fenway Park. I drifted off as we took a ferry. I would ask to sit down on a bench as we walked the Freedom Trail because the bones in my feet ached so badly. I am an active runner, so this was unusual to me. After I got back, I chalked it up to just the weariness of traveling. However, although the tiredness subsided a bit, the aches in my bones persisted. Thus, my two-year journey on the path to Hashimoto’s began.
The first doctor I saw was a podiatrist. He thoroughly examined and x-rayed my feet. Somewhat puzzled, he proclaimed I might have a slight stress fracture. He suggested a boot for a few weeks. Feeling silly, I obliged. I wore it for the prescribed amount of time, all the while thinking that it had done nothing to help and we really weren’t getting to the root of the problem.
Several months passed with some dull aches and pains present, but overall, nothing too extreme. I continued running and living a normal lifestyle. My pains came back with a vengeance in the spring, but they were different this time. The muscles in my limbs hurt as well as my joints. I even experienced what I would describe as tingling and numbness in my arms and legs from time to time. It was much worse this time around. I felt a constant need to stretch everything out or lie down. I needed to seek some help.
The second doctor I saw was my primary care doctor. She seemed perplexed too. My blood was drawn and when the results came in, she suggested a medicine that did nothing to help at all.
Summer 2014 was here, and I would experience the pains for weeks with them subsiding for a few days. I tried icepacks. They worked for the time being. I revisited the doctor’s office, and this time she prescribed me anti-depression pills. I rolled my eyes. I wasn’t depressed and never even had told her that. I refused to take them.
The third time I saw my PCP she suggested I get a scan of my brain because maybe it was multiple sclerosis. “We just want to rule everything out.” I stared at them in disbelief. Sure, they would never conclude that I had MS just because I ticked one box. But there I was getting my head scanned, the first of many due to developing an unrelated brain aneurysm the following year. The results came in and just as I expected everything was normal. Goodbye money.
By this time, I was fed up with the cocktail of drugs they tried to force upon me and the number of futile tests I had to endure. I switched doctors in September of 2015. My new doctor ran some blood work and informed me my thyroid levels were off. She sent me to what was now the fourth kind of doctor I had seen, the endocrinologist.
There, he confirmed that I had Hashimoto’s, an autoimmune disease of the thyroid. In all, it means I have an underactive thyroid (hypothyroidism).
The endocrinologist’s response to my question on where do I go from here was vague. He was the kind of doctor that couldn’t make eye contact and talked in hard to understand medical language. I left with the impression that I just do…nothing?
A couple of months later I went back to my new PCP doctor. In dismay, she shook her head when I told her of the endocrinologist’s lack of advice. I left her office that day with a referral to a new endocrinologist and a whole list of medicine and vitamins to take: a natural thyroid replacement medication, another medication to provide pain-relief and support healthy muscle tissue, Methyl B12 and Vitamin D. As I scanned my credit card for medicine and some new procedure for the umpteenth time, I prayed this time it would pay off.
A few weeks later after taking the medicine, my prayers were answered. I felt the best I had in years. A renewed energy. The road to recovery was underway.
At once, my doctor recommended I cut back on my gluten and sugar intake. I laughed. After all, all things good have sugar and gluten. But I nodded my head in agreement and avowed to radically change my diet. I already ate healthily, but eliminating all gluten and sugar was a bit of a stretch. I probably cut back 10-20 percent, but in all I skated by on the medicine alone until one day that simply was not enough.
After having more good days than bad for a while, things started to shift, and my bad days outnumbered my good. My joints and muscles started aching again, and my neck started to feel swollen. Trips to the doctor and endocrinologist yielded medicine changes and dosage switches, but I realized I had to get serious about my diet.
The first thing I did was buy a well-reviewed book called, “The Root Cause.” In the book the author details her journey with Hashimoto’s disease and treating the root cause rather than “putting a bucket under a leak.” The medicine was the bucket. Sure, it temporarily fixed the problem, but it didn’t stop it. After reading the book, I decided to stock up on the vitamins: Vitamin D, B12, Ashwagandha, Magnesium, Selenium, and Inflavanoid. Then, I undertook a big challenge: an elimination diet.
For three weeks, I cut out eight trigger foods: gluten, dairy, soy, shellfish, nuts, eggs, corn,and preservatives. It was really important to avoid these ingredients in their entirety, which I was shocked to learn that one or more of those things are in mostly everything, especially soy.
After a nightmare of three weeks in the food department, I was salivating to begin bringing back these foods one by one into my diet. What I learned was I had a gluten sensitivity and maybe a slight corn and soy one as well. But for the sake of my sanity I decided to go cold turkey and eliminate gluten all together. And I did for over a year. I was strict with myself and probably really annoying to everyone else, but I felt great!
Then I got pregnant and two months into it I craved gluten. After a few weeks of battling morning sickness, I caved and ate my first taste of gluten in over a year. Not too long after I completely fell off the wagon and was eating gluten like it was my job. If it affected me, I didn’t notice because well…pregnancy.
Finally, I had my son and decided to be gluten free 50-75 percent of the time. My friends and family can’t keep up, but I definitely can tell when I coming down from the high of too much sugar and gluten. My neck feels tight and I have little energy. One of these days I plan to get back off it 100 percent of the time, but for now I will savor every last drop of it.
Not only does diet affect Hashimoto’s, but so does lifestyle. The more stressed I am the more the disease flares up, and the more it flares up the more stressed I become from my tiredness and overall pain. It’s a vicious cycle. To counter that, I must really learn to manage my stress.
How I do that is by practicing taking deep breaths when I feel a huge wave of overwhelming feelings coming on. I have to pause, shut my eyes (if I am not driving) and take those breaths. It helps. I also learned to cut back on unnecessary work and commitment, and I lie down to rest when my energy is completely zapped.
It’s a lot of letting go, but my overall wellbeing and happiness is really important. Some other strategies that help:
- Writing down lists
- Doing a little bit at a time
- Saying no
- Asking for help
- Seven to eight hours of sleep every night
- Recognizing my limits
- Calming music
Ups and Downs
With Hashimoto’s disease, my doctor warned me that there would be ups and downs. I’ll have good days when the medicine is really helping, and then I will crash and have to learn to readjust. For example, after I gave birth I switched from hypo to hyper and was full of boundless energy, which rocked, so I went off my pills. Then bam, came the big crash, and I was back to being hypo and with that the need for my medicine again.
Overall I don’t love the disease, but I do love the feeling of having to be so attuned to my body and its needs. It’s a part of me, and it’s my journey.
Image via contributor