managing thyroid disease

I was asked to write a post about my own experience with thyroid disease, since I often mention it here as something that influences my own lifestyle choices. But before I explain my own experiences and thoughts on it, I want to state two things for the record.

This is only my experience and shouldn’t be construed as advice or a judgment on someone else’s experience or the way he/she chooses to handle his/her own disease. I’m not your doctor and I’m not a licensed expert of any kind (unless you count book expert since I have a master’s degree in literature).

I do not believe that all diseases can be cured or even necessarily affected by lifestyle changes. I am not anti-medication and will always encourage people to seek actual medical advice from a legitimate, licensed professional. (And I’m NOT talking about Dr. Oz here, okay?)

About five years ago, at a routine physical with my then-PCP, I mentioned that I’d had great difficulty losing weight even though I was watching what I was eating and exercising, and that I also was experiencing severe hot flashes/night sweats and having major difficulty sleeping. I was fatigued all the time as well (falling asleep on the couch at 6 p.m. kind of fatigued). He told me that “some women just have a hard time losing weight no matter what they do” and that there wasn’t an explanation for these symptoms, but that he’d order routine blood work anyway.

Lo and behold, I had hypothyroidism. He put me on generic thyroid hormone replacement (levothyroxine) and called it a day. So I started taking it and saw no relief, which led me to my first endocrinologist.

I am now seeing my fourth endocrinologist (who is fantastic and someone I plan on seeing until either one of us isn’t in the area anymore). That will give you an indication of how difficult it’s been for me to find real relief and support.

Throughout the few years that I was seeing other endocrinologists, I was misdiagnosed as being pre-diabetic (and took Metformin unnecessarily for almost a year, which was a total nightmare) and was also given different dosages of three different meds – generic levothyroxine, Synthroid brand levothyroxine, and Armour (synthetic porcine (pig) thyroid that includes T3). I was also made to feel like my symptoms made no sense, and therefore shouldn’t exist. I was also forced into the clinical “normal” range for my TSH (level of thyroid stimulating hormone produced by the pituitary gland) regardless of whether or not that was my body’s normal and told to just deal with the symptoms.

During that time when I was receiving no support whatsoever from the medical professionals I was seeing, I started to do my own research on behavioral/lifestyle modifications that might give me some relief. I realized that I had to take my health into my own hands and wanted to feel like I was doing everything that was within my own control to get relief. It was around that same time that I started to learn more about our industrial food system and its impact on health. Things started to make sense, and I decided to make changes in my diet.

I started small by eliminating soda and then moved to artificial sweeteners all together. I began to phase out unhealthy processed foods and then eventually moved to any hyper-processed foods, even if they were supposedly “healthy.”

Why? Because having a disease that creates chaos in my body’s levels of its own hormones and chemicals means I don’t need to add to that chaos by ingesting chemicals, many of them with unknown properties. To me, that’s common sense.

Did my symptoms disappear? No. But they were lessened, and I also noticed a dramatic shift in my energy levels, no longer being dependent on caffeine and stimulants in food for energy. When I felt good, I felt really good.

Later, I took a nutrition and fitness combination class called Project Jumpstart and I began to exercise. Exercise was something I had never incorporated into my life in any meaningful way, partially because I was so utterly exhausted. (This is a big way that hypothyroidism contributes to weight gain – it doesn’t necessarily make you gain weight, but it makes your metabolism so slow that you don’t have any energy to work out.) I started with a little bit at a time, and almost two years later, I’m about to run my first half marathon and I’m in the best shape of my life. Exercise has great energy benefits as well, and I notice my body feeling sluggish when I get out of my routine.

I also take the brand name thyroid replacement hormone, Synthroid. I take the brand because it’s recommended for people who need to have the exact same fillers with each dosage. When you take a generic pill, the fillers and dyes are different for each company that makes it and you don’t know what your pharmacy will be carrying from month to month. So for consistency’s sake, I take the brand. I have seen much better results with the Synthroid than Armour or the generic levothyroxine.

Essential to this entire thing is my new endocrinologist, who supports me keeping my TSH at a level where I have less symptoms. She also supports my own lifestyle changes with food and exercise, and helps me with other solutions for some of my symptoms, which she believed were triggered originally by my thyroid when the TSH was really high, but then continued even when the TSH came down (trouble sleeping and gastrointestinal difficulties).

In particular, she recommended a sleep therapy workbook that has really re-trained my brain to know how to sleep and rest properly, and I continue to use it to control my insomnia. It’s essential to find a doctor that listens to you and your needs, trusts that what you tell them about your symtpoms and your body is true, and wants to commit to helping you feel well, even if it means they spend 30 more minutes with you. 

My plan of attack for thyroid disease now consists of the following:


– Seeing my endocrinologist regularly and getting regular bloodwork to keep a close eye on my TSH
– Eliminating processed foods and hormones in meats as much as possible
– Reducing exposure to chemicals in household products that have been clinically shown to be endocrine disruptors
– Guarding my sleep and following the behavioral modifications to keep the insomnia under control

I hope that gives some insight as to how I manage my own disease. Leave any questions in the comments – it’s always good to share experiences!