Last Updated on September 24, 2023 by Anna Baumann
We Gravesters have all had our doctor tell us that everything is within normal range when we’re feeling anything but normal. I think that’s one of the most frustrating things I’ve learned about Graves Disease; doctors medicate us to keep our hormone levels in range, not to make us feel good.
For so long after my diagnosis, I told my Endocrinologist that I was still feeling anxious and sick to my stomach. I was shaky, my heart raced, and I felt profoundly exhausted. I wanted her to increase my medication (Methamizole) to see if that would help. But she wouldn’t do it because my lab results didn’t warrant it.
I respect that, but I still wanted to feel good. So I went looking for ways to help myself. The internet is a wealth of information. That’s not always a good thing! But my searching, reading and, trying has taught me a lot so I’ll share some of the highlights with you.
Gluten-free is not the answer.
Some research suggests there is a connection between gluten and thyroid disease. There is a theory that gluten mimics thyroid tissue and can trigger the body to have an autoimmune response. So if we eliminate it from our our diet we’re more likely to go into remission.
When I asked my Endocrinologist about it, she said that since my bloodwork does not show an allergy or intolerance to gluten, there is no reason to stop eating it. Her opinion is that there’s not enough evidence to support the whole gluten/Graves Disease theory. But, since I felt extra horrible and terrified of never feeling better again, I gave it a try.
I was gluten-free for almost three years, and I was super strict about it. During that time I did not go into remission. I also developed Thyroid Eye Disease and maintained a variety of symptoms like; heat intolerance, heart palpitations, anxiety, heartburn, and insomnia to name a few.
In 2017 I had a thyroidectomy. Shortly afterward, I started eating gluten again. I’m now at a point where I have more good days than bad days.
I don’t know the real reason why I feel better. But I do know that gluten does not make me feel worse. So I’ve decided that if I’m not allergic to it and it doesn’t make me feel bad, I’m eating all of the food.
Hyperthyroid is not guaranteed weight loss, and Hypothyroid is not guaranteed weight gain.
The thyroid affects metabolism. So it makes sense that if you speed it up (hyperthyroidism) you lose weight. If you slow it down (hypothyroidism) you gain weight. Oh, how I wish it was that simple!
I gained about 15 pounds before my Graves diagnosis. My first blood draw showed I was dangerously hyperthyroid. To give you fellow Gravesters an idea of how hyper I was, my TSH was .001. And yet I was gaining weight, and I couldn’t lose it no matter what. Some people with Graves gain or lose extreme amounts of weight. So I know I’m lucky that it wasn’t a lot more. But it was incredibly frustrating that I gained weight when my metabolism was supercharged!
Everyone worries that once their thyroid is gone, they’ll never be able to lose weight again. I was worried about that too. But thyroid removal has stabilized my weight. I’ve even managed to lose a few pounds. I’m hopeful that once some of my other female hormone issues resolve themselves, I’ll lose even more.
We must be open to trying new things.
Graves is unpredictable. What feels like a miracle cure for one person can do absolutely nothing for someone else. It’s easy to get discouraged and give up.
Gluten-free didn’t work for me. I made and drank fresh fruit blends with fancy kefir grains every day for six months because it was going to “heal my gut”. All I got out of that experience was constipation and a nice blender.
I’ve got a list a mile long of things that I’ve either added or subtracted to my life that didn’t work for me. There are also a lot of things that did work. But if I didn’t try, I’d never know!
- Tulsi tea and decaf green tea, help me feel calm and focused.
- Caffeine, sugar, and stress are triggers for making me feel various levels of crummy.
- I feel better walking or doing yoga than I do with intense cardio.
- The scent of lavender can pull me out of a panic attack.
Also, life and brain fog can make it hard to be in tune with your body and to remember the things you’ve already tried to help yourself. If you need a hand with symptom tracking, try journaling. Just a regular, lined journal works great to jot stuff down. Or if you’d like something a bit fancier, I’ve created a couple of prompted journals that include full symptom tracking charts.
Realizing that I had to be open to trying anything is the best thing I’ve learned about Graves Disease. It’s also the best advice I can give. Just try anything and everything that seems remotely helpful. Nothing is crazy if it works for you!
Disclaimer: This post is based on my own personal experience. It is not intended as medical advice. It is not intended to diagnose, treat, cure or prevent any disease or medical condition.