Things I’ve Learned About Graves Disease

One of the most frustrating things I’ve learned about Graves Disease, is that our lab results hardly ever match the way we feel. We’ve all had our doctor tell us that everything is ‘within normal range’ when, of course we’re feeling anything but normal. I think this was my first clue that Graves wasn’t only affecting my thyroid. My body is so confused, that it’s attacking itself. So who knows what all else is out of whack in there.

For so long after I was diagnosed, I’d see my Endocrinologist and tell her that I was still feeling anxious and sick to my stomach. I was in pain, my heart raced all the time, and I felt completely 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 showed I didn’t need it.

I can respect that. But I wasn’t willing to go on feeling horrible indefinitely. That’s when I went looking for ways to help myself. The internet is a wealth of information. That’s not necessarily a good thing! But my searching has taught me a lot, so I’ll share some of the highlights with you.

Gluten free doesn’t work for me

A lot of research has been done on the connection between gluten and autoimmune disease. In case you don’t know what I’m talking about, there’s this theory that gluten may be a trigger for the body to have an autoimmune response. In other words, if we eliminate gluten from our diet, we’re more likely to go into remission, and our symptoms will subside.

I told my Endocrinologist about it, and she said that since my bloodwork didn’t show an intolerance to gluten, there was no reason to stop eating it. So I explained what I’d learned. Her opinion is that there’s not enough evidence to support the whole gluten/autoimmune response theory. But there’s so much information about it. And not only online. I also read a couple of books that were written by medical doctors. And they really scared me. I was feeling so horrible, and I was terrified of never feeling better ever again. Even though my family and most of my doctors thought I was crazy, I decided to give it a try.

I was gluten free for almost 3 years, and I was super strict about it. During that time, I did not go into remission, and I developed Thyroid Eye Disease. I also maintained a variety of symptoms like, heat intolerance, heart palpitations, anxiety, heartburn and insomnia, just to name a few.

Almost a year ago, I had my thyroidectomy. Shortly afterwards, I started eating gluten again. Surprisingly, a lot of my symptoms have disappeared. I’m finally at the point where I have more good days than bad days.

I don’t know what’s at the heart of me feeling better. But I’ve decided that if something makes me feel bad, I won’t eat it. If a medical test proves that I shouldn’t have something, I’ll eliminate it. Otherwise, I’m eating all of the food.

We don’t always lose weight ‘hyper’ and gain it ‘hypo’.

The thyroid effects metabolism so it makes sense that if you speed it up (hyperthyroidism) you’ll lose weight. And if you slow it down (hypothyroidism) you’ll gain weight. Oh, how I wish it was that simple!

I gained about 15 pounds before I was diagnosed. By the time my thyroid levels were finally checked, 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 still so frustrating that it wouldn’t come off!

Everyone worries that once their thyroid is gone, they’ll never be able to lose weight again. I was worried about that too. But so far, the opposite has happened. My surgeon told me that it would be at least a year before my body adjusted to it being gone. I think he was right, because things are finally starting to slow down for me, and I’ve recently lost 12 pounds.

Even though it’s the opposite of what’s supposed to happen, my weight seems to normalize when I’m a bit hypothyroid. I wanted to share that for those who think that having their thyroid removed is the end of weight loss. Because that’s not the way it works for all of us.

I’ll do what helps me even if the rest of the world thinks I’m crazy

I firmly believe in natural remedies in addition to medication. If we aren’t open to trying new things we’ll never know what might be helpful. I just think we have to be careful with our expectations.

Like I mentioned before, I was gluten free for almost three years, and can’t think of a single benefit that I gained from it. But, some people swear it was the best thing they ever did. I made Kefir and drank fresh fruit blends with it every single day for six months because it was going to ‘heal my gut’. All I got out of that experience was constipation and a really nice blender.

On the bright side, because I’m willing to try stuff, I was able to figure out what works for me and what doesn’t. I discovered that caffeine, sugar and stress are my enemies. So I avoid them as much as possible. Tulsi tea really helps me to feel calm and focused. And lavender essential oil is a lifesaver when panic hits me like a brick.

The moral of my story is that Graves Disease is inconsistent. It doesn’t affect everyone the same. So before I do something drastic like, fire my doctor and stop taking my prescription medication, I’m going to do my best to find out what else is triggering my symptoms. These days I’ll try anything and everything if it sounds even remotely helpful. If it works, awesome! If not, I check it off the list and move on.

So be your own advocate. Ask all of the questions and read all of the books and blogs. Don’t ever feel crazy for doing what you need to do to help yourself. Nothing is crazy if it makes you feel better!

If you would like to share your experience with Graves Disease and gain support from fellow Gravesters, please join my FACEBOOK GROUP.

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.

Anna Baumann

Annoyingly cheerful Graves Disease Warrior and Dental Office Lifer. Eager to share, help and connect. Big fan of kindness, food, ocean cruises and reading books while drinking tea.

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  1. Mike Olds says:

    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

    1. 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.

  2. Leigh H says:

    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.

    1. 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!

  3. 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.

    1. 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!

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