Things I’ve Learned About Graves Disease
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.
This seems so frustrating! I’m so sorry to hear you have to go through this. I think it’s amazing you share your story to help out others.
Thank you Josephine. That’s exactly why I started blogging about it; to help other people know that we can live with this and be OK! Thanks for stopping by!
Hi, I just happened upon your blog and want to thank you. I have Graves, was in remission for 4 years, to only rear it’s ugly head again recently, can feel so lonely. I really thank you.
You are so welcome Leigh and thank you for tuning in. I feel like there’s just not a lot of places we can go to learn what living with Graves is actually like. I hope so much that this is a helpful and friendly place where we can all relate and help each other out. I hope you’re able to achieve remission again soon or at least find a way to feel well!
frustrating is not the word. it’s a daily struggle, I was diagnosed with graves disease 4 years ago. I was 32, I was always healthy, ate healthy, I was very athletic since I was 3, always playing sports, running. I quit smoking like my doctor wanted me to do well thank you Dr now I’m sick for the rest of my life. I had my whole thyroid removed what was suppose to be 45-60 min surgery turned out to be almost 4 hrs once my surgeon opened me up I was worse than the scans and tests showed. he said I was a very tricky surgery, December 15 will be 2 years and it’s like I’m dying slowly. my left eye was affected I’m losing strength in my body hands, legs feet arms, I’m still shaking, my memory some days I can’t remember what my husband and I talked about 5 mins prior, my levels are good from my blood tests. it’s very scary at times.
Thank you Anna for your blog. At 56 I was just diagnosed with Graves and thought I was getting better..oops! Your blog insight helps! Especially to know I’m not alone. Thank you! Mike
Hi Mike! Thank YOU for tuning in. I’ve taken a bit of a break from my Blog due to feeling a bit overwhelmed lately. But sometimes that happens. I know you can relate to feeling ‘Gravesy’ now and then. I’m slowly working my way back. I hope you’ll stay tuned so we can all weather the storms together.
Just starting to go through all the nonsense with my Dr. The most annoying thing is she doesn’t seem to listen to me.
I find your blogs extremely uplifting and informative. At least I know there is a reason for my unpredictable moods. Thank you for sharing your experiences, so others can have hope.
Hi Dawn!
Thank you so much for following!
I’m so sorry about your doctor. I think sometimes they forget that there’s an actual body attached to the lab results they’re reading. If our hormone levels are normal, they think their job is done. It’s very frustrating.
Be good to yourself. I’m sending peaceful, healing vibes your way! 🙂
I have tried to figure out my diagnoses for months now. I guess I am hyperthyroidism and Graves’ disease. It’s been crazy how it effects me but I’m trying to research as much as I can to find out more information.
Hi DeeAnna, Were you diagnosed by your regular MD or an Endocrinologist? Graves is a hard road. I think our doctors find it easy to get our thyroid hormones under control. But once that’s accomplished, it doesn’t mean our symptoms disappear. We work our whole lives to feel good. I hope you’re feeling well soon and that you find things you can use from my experience.
I was diagnosed by both, and I also took methimazole and feel terrible every day.
Hi Jakentria, I’m so sorry. Graves is uncomfortable and exhausting. I hope something changes for you and that you’re feeling better very soon!
So, I opted not to do RAI or have thyroid removed, but I did do something about a year ago. I stopped taking the methimazole. Oddly enough, I have been on beta blockers for my blood pressure since my early 20s. No endocrinologist ever talked about that after my thyroid storm and subsequent graves diagnosis. Despite the first time in over 20 years, cutting the dosage of the beta blocker by 75%, I was still experiencing serious episodes of bradycardia. It is interesting how we talk about normal labs versus optimal. Now I am on a completely different blood pressure medicine and no thyroid medication. I’m a little disheartened by the “thyroid labs are normal” because we all know that does not necessarily mean optimal. Thank you from the bottom of my heart for putting it out there that cutting gluten does not make everything awesome sauce for everyone! I swear it could be raining outside and somebody would say it’s because you eat gluten. 😂
Hello Ang, thank you for visiting! I believe we are sympatico! 🙂 It sounds like you’ve had a lot of Graves ups and downs and hope you continue to feel well!