Kristina Erfe Pines, founder and publisher of the late, beloved Spoonful Magazine, filled her Instagram feed with beautiful images of food. But in March 2017, she surprised her social-media followers with an unexpected pair of side-by-side photos of herself. In the first, a moody black-and-white, she appears strikingly thin, with downcast eyes; in the second, she smiles into the camera, strong and confident. This was her unique way of sharing a piece of personal news: She’d been diagnosed with Graves’ disease, and the photos show the changes in her appearance and attitude before and after treatment. Here, she talks to HealthCentral about failing to recognize the early symptoms, her family’s response to her fluctuating weight, and her newfound Graves’ community.
HealthCentral (HC): How and when were you diagnosed with Graves’?
Kristina: I was diagnosed at the end of 2016. As part of a routine checkup, I had my bloodwork done, and it showed high levels of thyroid hormones. So I went to see an endocrinologist, who confirmed I had Graves’. Up until that point, I didn’t really think anything was wrong with me, despite some symptoms. I’d had two instances where I felt like I was about to have a stroke or a heart attack. I felt my left arm go numb and a sudden, massive weight on my chest. I would feel like I could just fall to the ground because my body was so weak. But I thought, that’s normal. I had just started my magazine; I was managing a lot of people, managing a lot of investors’ expectations, so I felt constantly exhausted and stressed out. I thought, I need to get more sleep, or meditate more. Then I found out I had Graves’, and it all made sense.
HC: So it was just a coincidence that these symptoms appeared during a stressful period in your life?
Kristina: I actually began feeling very weak a few years before then, after I gave birth to my youngest. At first I thought I had postpartum depression. My daughter was only 20 pounds when I was diagnosed but I was having trouble picking her up and keeping her up, and I was so confused about why I lacked strength. I thought, oh, I need to work out more. But then when I would work out I wouldn’t have the same energy as I had before.
HC: What’s your treatment regimen now?
Kristina: I am on methimazole, plus atenolol, a beta blocker. They took me off methimazole for a while, but then I had an incident when I had this gripping chest pain that went all the way up to my neck, and I looked it up online and saw it was a symptom of a heart attack. I called my brother-in-law, who happens to be an ER doctor, and he said, “OK, take some aspirin, and monitor your breathing; but it could be a symptom of your Graves’.” After that my doctors, put me back on methimazole. They tried to take me off again but as soon as they did my hormone levels shot back up. Radioactive iodine is not really an option for me at this time because I have a young daughter who wouldn't understand why I couldn’t hold her or be close to her for several weeks after the treatment (because the radiation could be dangerous to her) — she’d just feel rejected.
HC: Do you feel like you are on course to live with this illness long-term?
Kristina: I definitely feel like I can manage. I work out five or six times a week; I have the strength that I need. I don’t feel as weak as I did before, and I’m gaining weight again. I lost so much weight before I was diagnosed.
HC: What motivated you to post those before-and-after photographs of yourself on Instagram?
Kristina: Before I was diagnosed, everyone was saying how great I looked because I was skinny. But I was feeling like crap, and the compliments were actually making me feel worse. I felt like a skull, a walking skull. And so I posted something online that said, listen, just because someone lost weight doesn’t mean they’re doing well. Before you compliment someone, you need to ask them, how do you feel? Because that is more indicative of the physical and mental state they’re in.
When I started gaining weight and feeling good about myself, people still complimented me but then my mom, in particular… my gaining weight wasn’t a good thing to her. So, for my family’s benefit as well for those who follow me on social media, I thought it would be a good thing to explain why I’m gaining weight and to say, guess what: I’m happy about it.
HC: Your magazine celebrates the power of food to build community. Did you look for a community to support you when you were diagnosed with Graves’?
Kristina: I really wanted to reach out to other people who had gone through the same experience but I didn’t know where to look. There was a Graves’ disease community on Facebook but there wasn’t really an ongoing conversation that I found stimulating. So I started having very frank conversations with people I knew. When they’d ask me how I was, I’d tell them I just got diagnosed with this thing. And I found out there were people in my life going through this as well — most have gone into remission, a handful are still undergoing treatment, a handful have gone through radioactive iodine so they are on thyroid replacement pills. I didn’t realize how many people I knew had Graves’ disease, because none of them talked about it. So I felt that in the same way that food is about gathering people, Graves’ became a vehicle to create another kind of community that brought my friends near and far together.
(Interview has been condensed and edited.)