Hashi & Me is a series of stories for people with Hashimoto’s told by people with Hashimoto’s and other thyroid problems. In each piece, one of us will share our experience with Hashimoto’s, our personal findings and tips. We believe one person’s experience can be useful for others, especially to newly diagnosed people.
This week meet Gail from Georgia, US.
When did you discover you had Hashimoto’s? Tell us your story.
I was having issues with fatigue and cold intolerance, this was about twelve years ago. The cold intolerance was the worst. I was out with friends one day and dressed for spring weather, and suddenly out of nowhere I couldn’t tolerate the temperature. I became lethargic, to the point that I couldn’t move, or explain myself. I was just saying, “cold” repeatedly through my chattering teeth while my friends piled extra jackets on me.
One of my friends said that she experienced this before because of hypothyroidism and she suggested that I get my TSH levels tested. She saved me. I was treated for thyroid issues for years before I learned about Hashimoto’s.
I started asking doctors to test me for Hashimoto’s, but they said it didn’t matter as long as I took my pills. But, I just kept feeling worse. Several years later, I found a doctor who tested my TSH levels-she diagnosed me with Hashimoto’s and helped me understand my condition better.
What did you learn since? Do you have some tips or findings to share with other Hashimoto’s people?
I learned that I just needed to keep asking doctors to help me, and that sometimes I had to move onto a new doctor. I also learned that every health issue that was dealing with was connected to Hashimoto’s. Everything from brain fog and headaches to fatigue. Even having celiac disease, as Hashimoto’s usually comes with more autoimmune diseases.
So, I have to take care of the Hashimoto’s and listen to my body. Take my medicine on time, exercise, eat the right healthy foods, and so on. Exercise feels like the opposite of what you want to do when you’re fatigued, but it’s important to find balance with it. Some medications can cause weird side effects, like hot flashes and so I learned that there are multiple treatment options. Doctors might only want to give you one treatment, but others exist. Some people change their diet, some take levothyroxine, and some (like me) take animal based thyroid hormones. I’ve done a lot of research to inform myself and get something that works for me.
The most important thing is learning to stand up for myself and my health. Ultimately, we have to be the ones to stand up for ourselves, even when we’re exhausted.
What does your day with Hashimoto’s look like?
Currently, it’s not as bad as it once was. It’s important for me to share the before and after.
I was on levothyroxine for many years. I would get muscle spasms that caused constant joint injuries. I was in a total fog all the time. And I would have hot flashes, although this was in my twenties and thirties. Worst of all, I was just too tired for anything. I work part-time at an animal shelter, which is a pretty physical job. I would come home and just fall into bed; wake up, take a shower, and go back to sleep for the night. I was very irritable all the time and I couldn’t keep my body temperature straight.
Then I switched to Armor Thyroid. I’ve read that the positive effects aren’t permanent and that I’ll eventually have to return to the synthetic thyroid. But, I’ll take what I can get. Since I switched, I have a bit more energy. I work out on my exercise bike, do art projects, and spend more time with my pets. I still find that there is a limited window of useful cognitive function throughout the day, and the rest of the time I’m sort of a zombie. But, it’s a bigger window than before. I have more trouble with feeling cold than I did on the previous medication, so I just wear layers most of the time.
I’m in physical therapy because I hurt my knees just living my life, but because of it I have more energy and I can do what I need to do to heal, so that’s nice. I have less headaches than before — way less! I still get tired — no, more than tired. I crash hard. But I’m not ashamed to take an afternoon nap when I need it.
What was the biggest struggle and biggest victory you experienced?
There’s the self-esteem part. Some people think that I’m lazy or seem disappointed that I only work part-time. Productivity culture can be really tough on people like us. I had to learn to not be hard on myself and not worry what other people may think-I call that a victory.
A few of months back, my pharmacy ran out of my medication. I hadn’t had my medication in a few days already at that point because of insurance issues. I tried to see my doctor right away but couldn’t get an appointment. I got knocked around from place to place everyone just kept saying, “you’ll have to wait a couple of weeks.” I knew I couldn’t last that long. I had brain fog and was irritable as hell, so I was getting very confused and angry. This was just making it more challenging to communicate with anyone. I then managed to get just two pills from a pharmacist.
After some days I found myself so weak that I couldn’t pick up my cell phone. I felt like I was under a ton of bricks. I managed to get my head together and message my doctor directly. The next day, she called me, apologized for what had happened, and gave me a new prescription for Armor Thyroid, which my pharmacy had in stock. The doctor didn’t even make me schedule a visit, because she understood that I was in a dire situation. I had to push myself hard to make myself heard-all with low cognitive function. This struggle made me stronger.
What advice would you give to someone newly diagnosed to ease their first steps with Hashimoto’s?
Make yourself heard. Tell your doctor if treatments aren’t working. Exercise, even if you don’t feel like it. Research your options. Get tested for food allergies, because those are really common for us and they can change all the time. Rest when you need it. Work or don’t — do what is right for you. Don’t let people make you feel bad. Try to find something that keeps your mind active, because it’s easy to fall into a funk. Work on healing. Take your medication at the same time every day. Drink a lot of water. Love your body, it works hard so take care of it.
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Originally published at https://www.boostthyroid.com on May 31, 2019.