I dedicate this post to all of those who have silently suffered, all those who have taken ownership of their health in spite of the challenges, and all those who have spoken out to raise awareness and create change, in honor of Autoimmune Disease Awareness Month.
This wire sculpture, entitled, “Chronic,” was created by an old friend from my hometown of Saginaw, Michigan. Her name is Valeri Trombley, and ten years ago she was diagnosed with an autoimmune disease called Psoriatic Arthritis, or PsA. She writes about her odyssey with chronic pain and the success she’s found in treating it with diet and lifestyle adaptations with such encouragement, helpfulness, and humor. Even without PsA, I completely identified. You can learn more about how Valeri is healing and living without medication on her blog, Autoimmune Arthritis Alternatives.
I reached out to Valeri on Facebook after she posted this photo a week ago. I couldn’t stop thinking about it. I couldn’t stop thinking about all of us on this journey, doing our best to focus on solutions and keep our chins up, when the truth is, most of us know this pose. It may not be a pose that’s comfortable to be in, or acknowledge, or even talk about, but my body recognized and could feel the shape and emotion of it immediately.
Have you ever had something grab your attention like that? Keep popping up in your train of thought when you’re daydreaming about other things? Oh look, there’s that sculpture again….And then in some cosmic convergence of events the reason why becomes clear.
Last week, a day or two after I got in touch with Valeri, I was about to pull out of the driveway when my phone lit up. It was the nurse from my general practitioner’s office. About a month prior I had spoken with the same nurse and requested a panel of thyroid labs: TSH, T3, T4, Reverse T3, TPO antibodies, and Tg antibodies.
“This is like deja vu,” she said as I rattled off the list of blood tests I wanted, “I just did all this for someone else.”
As a byproduct of my research here, I have learned how important these tests are and what they can tell you. I wanted to know if my body was converting T4 to T3, for example, and I also wanted to know if my hypothyroidism was autoimmune or more specifically, Hashimoto’s Thyroiditis.
I was diagnosed with hypothyroidism in 2011 shortly after the birth of my son. I was prescribed a synthetic T4 thyroid hormone (Levothyroxine) and have been taking it ever since. Every year since at my annual check-up I tell the doc I’m not sure my meds are working. I’m tired a lot, my joints ache, my hair is thinning, I’ve started having trouble with lingering and recurrent infections, and I have an ongoing battle with the blahs. I also seem to flat-line on my weight in spite of closely monitored calorie restriction.
Every year, the doc assures me that my labs are normal, my dosage is correct, and I’m probably just feeling the effects of aging.
Until recently, I chose not to look further, to take her advice and believe that she was right about my health. It was probably all in my head. Maybe I needed to accept that I was arriving at middle age, and this is how it feels. Maybe I needed to try harder, put more effort into my well-being, eat and drink even less, and ignore this escalating battle to get and stay vertical throughout the day.
I asked her more than once if there were foods I should be eating more of or avoiding, and the answer was consistently something along the lines of, not really. Read the drug pamphlet about what foods can interact with your medication, but otherwise, changing your diet won’t make much difference.
My doctor never mentioned that in the U.S., 90% to 95% of people with hypothyroidism have it because of an autoimmune disease called Hashimoto’s. She didn’t explain that with Hashimoto’s the body’s immune system attacks and destroys its own thyroid tissue, which over time can lead to destruction of the thyroid gland, thyroid nodules, thyroid cancer, and a cascade effect of other health issues including additional autoimmune diseases like RA.
Your doctor probably won’t either.
It’s not common practice in traditional medicine to inform patients of dietary and lifestyle adaptations for hypothyroidism. The research hasn’t caught up to the claims, but the testimonials are too many to ignore. More and more people are finding major improvement after switching medications, eliminating things like gluten, grains, dairy, soy, or fluoride from their diet. Since I’ve gone headlong down the hypothyroidism rabbit hole, I see and hear these stories all the time.
People are getting their lives, their libido, even their hair back by working with naturopaths, nutritionists, and integrative MD’s who are willing to spend the time to listen to and address their symptoms, help them systematically identify their unique triggers, and get them on medication tailored to their needs. There are also people doing it on their own with the help of books and online resources. The autoimmune-Paleo connection has become huge news because it works for so many. In addition to the countless stories I’ve read online, I have personal friends and family members who have treated autoimmune conditions with dietary changes and have been able to go completely off their meds. One of them is a practicing pharmacist.
Too many of us suffer needlessly for years. In talking with Valeri, and reading the gut-wrenching stories of others like Danielle from the super-blog, Against All Grain, it’s clear how commonplace this story line is among those with autoimmune disease: I suffered for years doing what my doctor told me, until I took matters into my own hands, did the research, changed my diet and/or my medication, and got my life back.
While I was at the hospital, waiting to have the lab work done, a collection of nature photos on the wall caught my eye. At the end of the series was a statement from the photographer. He described his decades-long struggle with an autoimmune disease called . . . Hashimoto’s. He stated that although he couldn’t hold a regular job or have a normal life because of his chronic symptoms, photography was a welcome outlet for the days when he felt well enough to get out of bed.
I couldn’t help but wonder, what kind of medical advice did he receive? Was he ever lucky enough, like I was, to learn by word of mouth that Hashimoto’s is treatable with diet and lifestyle interventions? If he hadn’t gone hunting for that information himself, the likely answer is maybe not.
Two weeks after my blood tests I hadn’t heard a peep about the results, so I called to see if they were in. The nurse returned my call that day in the driveway and nonchalantly informed me that although most of the tests were within normal range, my TPO antibodies were substantially elevated, indicating autoimmune thyroiditis. It was confirmed.
“So I have Hashimoto’s,” I said.
“It’s what the doctor expected,” she said. “Continue taking your Levothyroxine.”
I hung up the phone thinking, Seriously???!!! That’s it? If the doctor expected it, why didn’t she tell ME?
I’m not here to do a bunch of doctor or conventional medicine bashing. I like my doctor. I think she’s a thorough doctor who is following the same protocol as the vast majority of her colleagues. She was astute enough to catch my hypothyroidism before I even noticed any symptoms. And believe me, if you’re ever in a life threatening situation, you will be very grateful for all the technologies and medications available thanks to conventional medicine. But when it comes to the advisement and treatment protocols for Hashimoto’s and so many other autoimmune disorders, there is room for improvement.
I’m not okay with my body destroying a part of itself and not being informed. What damage has been done over the last 4 1/2 years when there may have been something I could have done to stop it? There’s no guarantee that I can reverse or heal my Hashimoto’s; however, had I been given the full range of treatment choices, I have NO DOUBT I would have opted for diet and lifestyle interventions in addition to medication. I mean, I am Hypothyroid Chef after all : )
The reason so many docs don’t test for Hashimoto’s or present hypothyroid patients with this information is because it doesn’t change their treatment plan. But it might have changed mine.
I got off the phone and pulled out of the driveway. My knuckles turned white around the steering wheel. It wasn’t a huge surprise, but it broke open the torrent of frustration that I don’t normally allow myself to feel about this condition that has so slowly yet drastically affected my life, like a glacier cutting away everything in it’s path at inches per year.
I felt a righteous anger rise in my chest, tightening my shoulders and belly as it pinballed through my body, demanding to be let out.
Then, I did something my mother recently told me she did to cope during the most difficult year of her life– the year after she became a widow at 35. I screamed. I screamed at the top of my lungs. It was a primal roar that I have never before heard emit from my body and it lasted for a block and a half. If I hadn’t run out of oxygen, I could have gone on for miles. It felt amazing. What a release. Afterward, I was hoarse for hours.
Something else my mother taught me about how to survive what life throws at you, is to focus on the positive. I don’t like to dwell on the disease. Despair doesn’t help me heal. Instead, I try to feel thankful for my relative good health. I like to think about solutions for the places that need improvement. I like to share ideas about what we CAN eat and enjoy, rather than complain about what we can’t. Trust me; I have my days of total willpower failure and self-pity. Things like cold beer and fresh pasta are worthy of grieving in my book, and I haven’t exactly been perfect in avoiding them. But we must pick ourselves up, dust ourselves off, and move on– that’s another one from my mom.
There is no one-size-fits-all solution to hypothyroidism. We all have to find our own way through, our own balance, and our own survival mixture.
Perhaps the moral of this shared story is that we must be advocates for our own health, and for each other’s. We do that by sharing our stories. Ultimately, someone sharing their story is what veered me away from the path of ignorance to the path of awareness.
Last year, after I happened to mention to a cooking class I was teaching that I had hypothyroidism, a student raised her hand and shared her hypothyroidism success story. She didn’t have to, but she did. When she told me that both she and her sister had reversed their condition by strictly omitting wheat, it changed everything for me. For that, I am grateful.
And I am grateful for the thousands of others who have had the courage to dive headfirst towards their well-being, and share their stories.
Here are a few places you can find and join other voices:
- Thyroid Change: The United Voice of Thyroid Voices Worldwide
- Thyroid Nation: United We Heal
- Hashimoto’s 411: Linking Thyroid and Autoimmune Disease Communities
Here are my favorite places for information on living with and treating hypothyroidism and Hashimoto’s:
- Hypothyroid Mom: Dana Trentini is a health activist on a mission to drive awareness.
- Thyroid Pharmacist: Dr. Izabella Wentz. She wrote the manual on how to find your Hashimoto’s triggers. Buy it here.
- Dr. Jolene Brighten: A naturopathic doctor who writes extensively on hypothyroidism, autoimmunity, and pre and post-natal care.
- Mary Shomon: Thyroid disease expert, patient advocate, and writer. Buy her book, Living Well with Hypothyroidism, here.
I recently wrote out a health timeline, as part of the process outlined in Dr. Izabella Wentz’s book on finding the root cause of your Hashimoto’s. It’s a fantastic resource and creating my timeline was an eye-opening exercise. Looking at my former life, compared to my health over the last five years it was plain as day. To some degree, Hashimoto’s has affected every single aspect of my life, from my work as a food writer and cooking instructor, to my marriage, my health, my diet, my appearance, my social life, my parenting, and my mood. It was hard to look at, but it’s there, and it’s real. That’s the thing with autoimmune diseases– just because people can’t see them doesn’t mean they’re not there. It’s not all in our heads. As Valeri stated in regards to her sculpture, “The struggle is real.”
That moment in the car, my fury was unleashed for the way things are. For all I’ve had to give up, and all the more I will have to give up in the years to come. For the health care I should have received, and that we all deserve. For all those whose lives have been diminished or destroyed due to lack of knowledge, and lack of better advice. And for those days. You know the ones. The days when we find our bodies in the pose Valeri Trombley captured so well in her copper wire sculpture, head in hands wondering, what’s wrong with me? Why do I feel like this?
The focus of the conventional approach to treating hypothyroidism and Hashimoto’s is medication– a best-selling medication, often prescribed for the duration of a person’s life and in increasing dosages as the thyroid is destroyed. In 2013 and 2014, Synthroid was the #1 selling drug. It’s every pharmaceutical company’s dream. From the receiving end, I’m so glad that medication exists. But the disregard or dismissal of lifestyle interventions by doctors does nothing to prevent progression of the disease. It does nothing to save our thyroids.
This needs to change.
Change is never easy, but usually, it is good. It’s hopeful to see so many people courageously making their health a priority. To me it indicates a shift away from masking and denying our symptoms, and on a deeper level, ourselves. This is about so much more than hypothyroidism or Hashimoto’s, isn’t it? It’s about feeling worthy of good health, and confidently asking for that from our doctors and health care providers, our farmers and food producers, our politicians and policy makers, our families and most of all, ourselves.
As luck would have it, here I am at the end of Autoimmune Disease Awareness Month, with the newfound awareness of an autoimmune disease. This Hashimoto’s diagnosis is a big new puzzle piece for me to integrate. Changes will need to be made. I’m not just eating and cooking for an underactive thyroid anymore; I’m also eating and cooking for a confused immune system.
The amount of information to absorb is overwhelming, but in piecing together an action plan I know this: I need help. So I made an appointment with a new doctor who a friend calls “The Hormone Queen.” I have to wait six more weeks to see her. In the meantime I will be pondering choices regarding how to pinpoint my triggers, which could include stress, toxins, hormonal imbalances, and food sensitivities, just to name a few. And of course, I will be continuing to share my recipes with you, featuring foods that support and don’t hinder our thyroid health.
So here I am, dear readers. I have Hashimoto’s. If you’re reading this blog, you probably do too. If you have been diagnosed with hypothyroidism, and aren’t sure whether it’s Hashimoto’s, this article is a good place to start unraveling the mystery of your health. Let’s learn, share our stories, and try to heal, together.
The journey continues, and is only just beginning. I look forward to continuing to share it with you.
Thanks for reading. Thanks for bravely setting out on the path towards healing. We walk it together.
Wishing you all the best of health,