Issues with fertility often go hand in hand with thyroid disorder and hypothyroidism – something Dana Trentini of Hypothyroid Mom knows first hand. Her own journey was painful but also the inspiration for the powerful support and advocacy work she continues to do to this day. Her blog and her books literally transform people’s lives, and we are grateful that she’s here making a difference. We recently had a chance to talk with Dana about her journey, the support and resources she gives people who are suffering, and the change she’d like to see. Our full Q&A with Dana is below and we hope you’ll join us on Monday, February 27th when Dana hosts a webinar all about the embarrassing Hashimoto’s symptoms no one is talking about!
In addition to your blog, Hypothyroid Mom, you cowrote Your Healthy Pregnancy with Thyroid Disease – it’s a topic that’s close to your heart. How did your own experiences with pregnancy and pregnancy loss inspire you to become an advocate?
I lost my unborn baby at 12 weeks needlessly due to my maternal hypothyroidism. I knew something was very wrong with me during that pregnancy. My hypothyroidism symptoms worsened to an alarming degree and I felt sick and “toxic”. There is no other word to describe the sickness I felt. I said out loud to my family, “I think there is something wrong with the baby.” I miscarried days later.
My body knew there was something wrong but I disregarded the warnings because my doctors dismissed my concerns. I knew deep inside me that there was something very wrong but I stopped pushing. I stopped advocating. I did not protect my child.
I have to live with that regret for the rest of my life.
I threw myself into deep research mode. I had been the team leader of a distinguished professor’s research team during my two years of graduate studies at Columbia University, so I was no stranger to research. I discovered that the Endocrine Society had issued pregnancy guidelines for women with thyroid disease. They recommended a TSH of less than 2.5 in pre-conception and in the first trimester, and less than 3.0 in the second and third trimesters. My TSH was right near 10.0 throughout that pregnancy. My New York City doctors had NOT read the guidelines.
At age 40 I got myself so thyroid healthy that I went on to have my second son Hudson. My doctors had told me that I would never carry a healthy pregnancy again. I proved them wrong.
I created Hypothyroid Mom in memory of my lost child. I wanted to show my child (who I know watches over me every single time I write at Hypothyroid Mom) that I was sorry for not fighting harder. I would stand up and protect hypothyroid women and their babies for the rest of my life…and Hypothyroid Mom was born.
When people find you online, where are they typically in their own journeys? What are the topics that resonate most with your audience?
With now over one million followers after 4 years of Hypothyroid Mom, I know that I have people at all stages of their journey. I would say that the majority find me after years of feeling awful on their T4 only thyroid medication and they notice a Hypothyroid Mom Facebook post and think wow that sounds just like me.
While my life’s mission is protecting the babies of women with thyroid disease, my blog Hypothyroid Mom has really broadened to help all people (women, men, children) at every stage of their disease, whether or not they wish to be pregnant, to live fabulously with hypothyroidism.
Fatigue by far is the number one topic that resonates with my audience. How can you function day to day with a fatigue so deep you have to fight to stay awake? Hair loss, chronic pain, anxiety, panic, depression, mood swings, skin conditions, low libido, digestion issues, infertility, multiple miscarriages, and marital problems are some of the other biggies.
Hashimoto’s is the number one cause of hypothyroidism, yet the majority of my followers that join me for the first time have no clue they have Hashimoto’s. It’s not until they read a Hypothyroid Mom article that they push their doctors for thyroid antibody testing and so many write to say thank you. If not for Hypothyroid Mom, they would have never known they had Hashimoto’s. They discover for the first time that they have an autoimmune disease and then learn about all the various triggers and treatment considerations. That makes me smile to know that Hypothyroid Mom has been helpful in some way in someone’s life. I can’t think of a greater gift to me than that.
What’s the first thing you’d tell someone who has reached out to you because they are at the end of their rope and don’t feel like they can cope with their thyroid symptoms for one more day?
I hit rock bottom with hypothyroidism where I couldn’t keep my eyes open to care for my first-born son Benjamin. I worried that I would never get back up from the black hole where I found myself. Unless you’ve been there you really can’t imagine how bad it can get. I know there is hope to climb back up and feel wonderful again. I know there is hope because hope happened to me.
I can’t even count how many times I’ve told a Hypothyroid Mom reader to hang on, stay with me, and I will help you to the other side.
Finding an open-minded doctor is essential to our wellness. It is literally like winning the “health” lottery for a thyroid patient. I share the Hypothyroid Mom article “30 online resources to find a good thyroid doctor” and I encourage them to find a good doctor, even if it means seeing 20 doctors before they find “the one”.
If you could solve just one frustration thyroid patients have right now, what would that be?
I would walk into every medical school, every medical association, and every doctor’s office and there are two major things I would shout:
“T4 only levothyroxine medications are FAILING many of your hypothyroid patients!”
“The TSH thyroid lab test is BS. We need full thyroid testing including Free T4, Free T3, Reverse T3, Thyroid Peroxidase Antibodies, and Thyroglobulin Antibodies, and for those with hyperthyroidism symptoms Thyroid-Stimulating Immunoglobulin.”
What has been the most challenging thing about becoming an advocate?
For the first year and a half I answered literally every single email, every single comment, every single tweet, every single FB post on my page from every single Hypothyroid Mom follower. It was important to me to provide whatever information I could for each person. Then the blog and FB page grew so quickly and I tried to keep up with every message and worked countless hours answering every single one and I blew my adrenals and my thyroid health came crashing down again.
I discovered that to do this advocacy at Hypothyroid Mom I also have to take care of myself. If I fall ill then I won’t be able to continue my advocacy. While answering every message is impossible now with so many followers, every day I think to myself what major thing can I do at Hypothyroid Mom that will impact as many people as possible. I’m back to feeling incredible at age 46 (I actually feel better than I ever did at 30!) and I’m ready to help others do the same.
And what’s the best or most rewarding thing about the path you’ve chosen?
I don’t know how to express in words what Hypothyroid Mom has done for me. I started this blog from a broken heart having lost my unborn baby needlessly. I felt tremendous guilt for not having listened to my instincts that I was unwell and to be an advocate for my child. The Hypothyroid Mom followers have healed my heart.
On Monday, February 27 at 7 p.m. ET, Dana will be chatting about the embarrassing hypothyroidism/Hashimoto’s symptoms no one ever talks about and the Hypothyroidism treatments that aren’t a part of mainstream medicine. RSVP here!