The Frustrations of Being a Graves Disease Patient

Last Updated on September 24, 2023 by Anna Baumann

Focusing on one area/system of the body is supposed to make doctors experts in their field. But are they becoming experts, or just developing a bad case of tunnel vision? I apologize for coming off a bit sarcastic. But, my question stems from dealing with all of the frustrations of being a Graves Disease patient.

When I was growing up we went to the doctor when we got sick. And when I say the doctor, I mean that there was only one. Whatever was wrong with us, we just saw the one guy. He took care of everything because that was his job. And you know what? We always got better. He knew how to treat everything, because he saw everything. And even better, he knew us. Have you noticed that hardly ever happens anymore? That your doctor actually knows you?

I’m really not against specialty medicine. I understand the need for it, and I realize all of these doctors have more intelligence and education than I’ll ever have. But as Graves Disease patients, we have a disease that effects our whole body. The specialist doctor isn’t committed to improving our overall health and well-being. They’re only looking at Graves from the perspective of their own specialty.

Your levels are in the normal range

That’s my Endocrinologist. She’s probably one of the smartest people I’ve ever met, but I think she might be partially deaf. She doesn’t hear me when I tell her that two years post thyroid removal; I’m shaky, exhausted, my joints ache, I’m anxious for no reason, can’t focus, and my weight goes up and down randomly. Her opinion is that none of this is caused by Graves Disease because ‘my levels are within the normal range.’ So I ask her if my levels being in the normal range means that I no longer have Graves Disease. She tells me no. ‘You’ll always have Graves because there is no cure for it.’

So I’ll always have Graves, but none of my problems are because of Graves? ‘Yes. Your levels are in the normal range. I’ll see you in 6 months.’ She tells me that her job is to keep my thyroid hormone levels within the normal range, and she is doing that.

Okay great, thank you for helping me expert specialist. Can you please tell me whose job is it to help me feel better? How do I get an appointment with that specialist?

Stop eating gluten it’s inflammatory

This was my OBGYN. I was gluten free based on her advice for almost three years when I was first diagnosed. I never went into remission, I developed thyroid eye disease and I really didn’t notice feeling any better. So after my surgery, I went back on the gluten.

Recently, after I complained to my Ophthalmologist (who specializes in Thyroid Eye Disease) that I was still dealing with a lot of serious symptoms, he suggested that I go gluten free. ‘Gluten is inflammatory and Graves loves inflammation’. Are you sure? I know my OBGYN believed in it. But my Endocrinologist completely disagreed. She said that gluten won’t make a difference unless I have an allergy or intolerance. His response was that it might not help, but ‘it can’t hurt’. So, where gluten is concerned I have three expert, specialist opinions. Stop eating gluten, don’t stop eating gluten, and maybe give it a try.

I’m so glad we’re all on the same page here!

These are just a couple of my most recent frustrations. If the Endocrinologist only focuses on my thyroid hormone levels. And the Ophthalmologist only focuses on my eyes. Where is the doctor that helps the whole rest of me?

I’ll always be that person who follows doctors’ advice, because I feel that they must know more than I do. But what do I do when they all have different opinions on the same thing, or no opinion at all? It’s like they either radiate the thyroid or take it out, and then we’re on our own.

Don’t get me wrong, I have a lot of good days. Many more than before my thyroidectomy. But if my ‘levels are within the normal range’, shouldn’t I feel good all the time? And if I don’t, shouldn’t someone know how to help?

It’s all so frustrating! But what can we do?

We can support each other!

Since different things seem to work differently for all of us, it’s nice to have places where you can search for a bunch of options or just throw out a question.

I love my online support groups! It’s wonderful to connect with people who can truly relate to what I feel. I’m in a few groups on Facebook where I get a lot of great advice, and am able to share my experiences more personally. If you’re not a Facebook person, I’m sure you can find a thyroid disease support group in your area. Maybe check with your local hospitals or health centers.

Here are a couple of Facebook links if you’re interested:

Graves Disease Support Group

Graves Disease, what everyone should know

Graves Disease Warriors

Graves Disease Warriors is my group that I created for my blog readers. It’s small, but it’s growing!

We can be willing to try anything!

Sometimes the best thing you can do is just keep an open mind. If someone suggests something that has helped them, try it! If there’s one thing I’ve learned, it’s that you never know unless you try. Think of all the time we waste thinking, ‘Awe, that will never work.’ Only to find that we could have been feeling better a lot longer if we were more proactive.

Just stay positive and; Never. Give. Up.

I know some of this is a bit of a downer. I thought about saving it until I have more concrete advice to give. But then I remembered; I’ll never have concrete advice. This is Graves. It’s messy and there’s no one thing that will help us all. That’s why I know there’s someone else out there right now feeling just like me. So please know that even though we don’t have a cure, we do have each other. Sometimes it’s just comforting to know we’re not alone.

‘The best thing to hold onto in life is each other’. ~ Audrey Hepburn

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.