Just diagnosed with Graves’ disease? Now what?

The word is out.

You have Graves’ disease.

Maybe you feel relieved. Finally, a diagnosis. A reason for losing your mind, your sleep, your weight, and your hair. For being super agitated, always hot and sweaty and so on. You’re sick. So, when can we start the treatment?

But maybe you’re more like me. You started crying the second your doctor opened his mouth. Because that’s what you do these days. You cry. Also known as emotional lability, another maddening Graves’ disease symptom. And it doesn’t improve by hearing the words “chronic disease”, because, well, that sounds rather… chronic.

I had hoped to hear it was postpartum thyroiditis, which would pass by itself within a year. Instead, my doctor told me that given my test results it was highly unlikely my condition would go into spontaneous remission. Even medications, he felt, wouldn’t cut it for me. They would only delay the inevitable: having my thyroid destroyed through radioactive iodine (RAI I-131) or surgically removed.

The presented options didn’t sit well with me. They were radical. Irreversible. What if there was another solution? Something that could deal with the underlying problem? That could address my overactive immune system instead of its victim, my poor butterfly-shaped thyroid gland. I needed to know more about all options available to me before I could decide.

You likely need to know more too. But how and where to start?

Since I was in your shoes, I may be able to help you. Help you make a balanced choice about what course of action to take with your Graves’ disease. Here are some points worth considering.

Forewarned, forearmed

Keep in mind, you are at a slight disadvantage when it comes to making the right decision. Unfortunately, Graves’ disease is known to cause irrational decisions. Research showed people with hyperthyroidism tend to prefer short-term rewards despite longer-term punishment.

You may also feel hurried or pressured to make a decision fast. This is likely caused by anxiety symptoms and the fact that your body’s working in overdrive 24/7. I learnt from my previous boss and mentor to never make an investment decision Friday late in the afternoon. When people are pushing you to sign something so they can go home and celebrate the weekend. It simply doesn’t result in optimal decision-making.

(Try to) sit back and relax a little. (Note: did you know you can trick your mind into believing you are relaxed just by taking a couple of deep breaths?) As long as you’re under your doctor’s care, you should be safe for now.

I found this article highly useful. It made me realize I did have some time to investigate my options. Time to figure out what would be right for me.

Informed consent requires information

How can you give informed consent for any treatment without knowing the relevant information? Simple. You can’t, can you?

I understand, it’s impossible to know everything about Graves’ disease, about possible (treatment) options, about your thyroid gland, about autoimmunity etc. Yet, you can aim to learn as much as possible. So, search, read, and take notes. By reading about these topics, questions likely pop up that are relevant to your situation. Questions about risks, side effects, long-term effects, possibility to get pregnant in the (near) future, alternatives, what lifestyle interventions could do for you, and so on.

I recommend reading one (or both) of these books:
– “Graves’ Disease: a Practical Guide” by Elaine Moore
– “Advances in Graves’ Disease and Other Hyperthyroid Disorders” by Elaine A. Moore and Lisa Marie Moore

I found these books particularly helpful as they present a wide range of treatment options, both conventional and alternative. It discusses their pros and cons, including things you may not even have considered. These books provide a balanced overview that can help you shape your own opinion about what’d work best for you in your situation.

Another trusted resource is pubmed, a medical research library publishing all medical research. And one more I like is Greenmedinfo. This source also publishes research more biased towards a natural, holistic approach.

Bear in mind that the more engaged patients are in their own health, the better their health outcomes.

Be your own best advocate

Remember, no-one cares as much about your health as you. No-one is as invested in you as you. So be your own best advocate. Ask the right questions. Don’t let yourself get dismissed because there’s not enough time to answer all your queries. And if you don’t feel comfortable with the doctor you’re currently seeing, find another one. He needs to be on your team.

In the eloquent words of author John Steinbeck: “What do I want in a doctor? Perhaps more than anything else – a friend with special knowledge.”

I don’t know you or your specific situation. What I do know, is that you owe it to yourself to do some thorough investigative work before making a decision. Because, let’s face it, this choice you’re about to make, may have consequences for the rest of your life.

So, take a deep breath and start your research.