A “Grave” Conversation About Insurance and Labeling Laws

Where do I start? In January I was lying down in bed, and Kris and I both noticed the rapid and intense pounding of my heart. I began noticing a slight shortness of breath, and my hands were shaky. I immediately called my endocrinologist, suspecting my thyroid medication for hypothyroidism was too high. I was told to go off my medication for several weeks, yet symptoms persisted. I turned to the online celiac community to ask for advice while I searched for a new, more proactive endocrinologist. We bounced around several ideas to ask the doctor about, but one person hit the nail on the head. My new awesome doctor reviewed my symptoms and test results and gave me a new diagnosis – Graves’ Disease.

F***ing scariest name for a disease, right? Look past the name. It’s the autoimmune condition associated with HYPERthyroidism. Yup, somehow it was triggered. Of course when you have one autoimmune condition you’re more susceptible to others.

While all this was happening, a sudden exhaustion hit me and persisted. I’d rest and pace myself out for the day. I also got a prescription to help me lower my heart rate. My heart is currently slower, but still above normal.

What’s next? I’m in limbo, waiting for help. This brings me to the bigger points – insurance and labeling laws.

I received a prescription to treat Graves’ Disease itself. Why am I not taking it yet? Here’s what happened:

  • My doctor sent the prescription to my pharmacy.
  • I called the pharmacy to get the NDC number and brand of the generic medication my insurance will cover.
  • I called the generic brand. It’s not gluten free.
  • I asked my doctor for another prescription for the brand name medication that is gluten free.
  • I called the pharmacy. The name brand is not covered by insurance and is $200 for a one month supply.
  • I asked the pharmacist if there is another generic brand that my insurance will cover.
  • I called the second generic brand. I got put on hold for twenty minutes to find out it’s not gluten free.
  • I called the pharmacy to ask what I needed to petition this.
  • I emailed my doctor and asked her to fill out a petition for the insurance to cover it because it’s a medical necessity.

Now I wait. Unfortunately, the petition process can take weeks, and here I am struggling.

This is in part because the US has no labeling laws for gluten in medication. In some other countries it’s much easier to get whatever brand of medication you need because either it’s clearly labeled for gluten or you just have to ask for it. 

I also recall a time that I went to the emergency room for kidney stones and was given a prescription to take later that night. I went straight to the pharmacy, but I was released from the hospital after business hours. I asked the pharmacist if they knew the gluten status of the medication. They had no idea, and the medication brand’s office was closed for the day. The pharmacist didn’t know what to do, so we called the hospital. They said to not take the medication and to come back to the hospital later that night if needed.

No one should be told to do this just because our government will not label medications properly.

I’ll preface this next part by saying that I am very grateful to have health insurance. However, I’ve been through the petition process before, and they don’t seem to understand why I can’t take just any medication. One of my previous doctors had to spell celiac out to them and asked, “Do you want to send her to the hospital?” That medication was approved, so I’m hoping this current petition will work out similarly. I’ve spend weeks trying to get this medication, and it looks like I have several more weeks of waiting.

No one should have to jump through these hoops to get a medication that is a medical necessity.

I’m the type of person who only takes medication if it’s an absolute necessity, yet this continuously proves to be one of the hardest parts of having celiac disease (for me, at least). One recourse that has been helpful – GlutenFreeDrugs.com. It’s run by a pharmacist who has a passion for the celiac community, and simply wants to help. No money involved. Not every brand is listed, but it’s a really good start.

If you have had similar struggles, I encourage you to share. Folks without celiac disease don’t realize the privilege they have of being able to stop by the pharmacy and simply get what they need. Let’s demand change.

4 thoughts on “A “Grave” Conversation About Insurance and Labeling Laws

  1. I hope you are able to get on the right meds at an affordable cost. They’ve changed the dosages on my thyroid meds four times in the past year and I still don’t feel they are right. I feel so awful all the time.

    Liked by 1 person

  2. Let me start by saying that I am so sorry that you are having all these health issues and unable to get the proper medication. Secondly, let me tell you that I went through a situation when I was getting medication for my husband after he had back surgery and was released from the hospital. Fortunately for him he does not have celiac or any allergies. We dropped off the prescriptions and was given a call a few hours later letting us know that they couldn’t fill 2 of the prescriptions as his insurance would not authorize it. He called the insurance and then I got sent back to the hospital to pick up another prescription that the insurance agreed to cover and the pharmacy had. Once I had the new prescription, I went back to the pharmacy to get it filled and was told that this was not the agreed upon prescription and they could not fill it (they didn’t have it in stock). Thankfully the pharmacist was nice and called around to find a pharmacy for me to go to that could give me the prescribed medication. All in all, a simple prescription took many hours to get for a man who just had surgery and was in great pain.
    I am originally from Canada where we have a much easier time getting prescribed medications and thankfully our labelling laws have much higher standards so we have less trouble with both your situation and my husbands. After the difficulties getting my husbands medications and dealing with the insurance company, I can honestly say that I think it is a combination of not having labelling laws and the insurance companies.
    I hope that your petition goes through and you get the correct medications that can help you out.


    • Hi Andrea, Thank you for sharing. I’m so sorry to hear about the struggle with that medication. I’m sure it was nerve wracking for both of you. These situations should never happen. I hope our country can catch up with Canada.


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