Undiagnosed Hypothyroidism: One Woman's Story
For decades, Lizzy, creator of the popular Miss Lizzy blog, lived with undiagnosed hypothyroidism. This condition is so easily missed because of its subtle and not so clear symptoms that could be attributed to many other factors. Lizzy would cite symptoms like weight gain, fatigue, dry skin, cold sensitivity yet many doctors would dismiss her, some even thinking she was looking for a quick fix to lose weight.
We hope this interview provides more insight into what it’s like to live with hypothyroidism.It is not meant as an endorsement of any product or particular treatment.
“I always felt like something was wrong inside my body” Lizzy says on her blog. She began to listen more to what her body was saying and sought the support she needed to begin her journey to recovery. She shares her story with us, here.
HealthCentral (HC): So, what got you writing about hypothyroidism?
Lizzy: After a long journey to find a treatment for hypothyroidism and adrenal fatigue, and with minimal information at the time, I decided it was important to share my story and research to help others. For many patients, like me, conventional medicine and “normal lab results” left us untreated, feeling terrible, and suffering. If people could see my story through before and after pictures, and hear about all the positive changes in my life as result of the right treatment, I hoped it would inspire them.
HC: Can you talk a little bit about how you were feeling before you were correctly diagnosed with hypothyroidism? What were your experiences with your past doctors like?
Lizzy: Before treatment for hypothyroidism and adrenal fatigue, I spent 35 years of my life feeling tired all the time (even after 8 hours of sleep). I experienced brain fog which made it hard to think and do everyday activities. Exercise made me feel worse. I was always overweight, even with a proper diet. My body, especially my feet and hands, was cold all the time. I experienced chronic sickness including sinus infections, allergies, and asthma. I had high cholesterol by the time I was 20 years old. My hair, nails and skin were dry and brittle. The list goes on. During all these years, I would tell doctors about the myriad of symptoms. Either they treated the symptoms individually, sending me to one specialist after another. Or they said it was in my head and to see a therapist. Doctors would tell me to “eat less” and “exercise more”. It was discouraging and heartbreaking that no one listened or could solve this very common, easily identifiable condition.
HC: Based on your experience, what advice would you provide people who may be experiencing symptoms like you did but aren’t really progressing with their doctor?
Lizzy: I would say what my good doctor said to me “Trust your inner being. If something feels wrong, trust yourself.” If something doesn’t seem right, don’t let it slide! This is YOUR LIFE! Its up to you to get the help you need. Don’t wait around 35 years for someone to figure it out. If a doctor doesn’t act like your ally, FIRE the doctor and find someone who will work with you and listen. Be proactive, take your body temperature, do the symptom worksheet, get a saliva test for adrenals. With proper treatment, everything in life gets better. Take things day by day and do a little bit each day.
"It was discouraging and heartbreaking that no one listened or could solve this very common, easily identifiable condition."
HC: What were some of the more extreme symptoms you experienced with hypothyroidism?
Lizzy: Constant exhaustion, inability to sleep, difficulty waking up, chronic illness, dry brittle hair, cold hands and feet, lightheadedness when standing up, no sex drive, brain fog making every day tasks difficult, mood swings, mild depression or feeling blue.
HC:How has your relationship with your weight changed before and after you were diagnosed with hypothyroidism? How can women take control of their bodies when living with hypothyroidism?
Lizzy: Before treatment, I struggled to lose weight. In the early stages I was 10-15lbs overweight. Two years after pregnancy when the hypothyroidism peaked, I was 30+ lbs overweight. It didn’t matter how healthy I ate, I could not lose the weight. Once on the proper treatment, and eating moderately healthy, the weight just came off. Women can take control of their bodies by looking at their symptoms and getting the right treatment. When the body is balanced and treated well, it naturally works.
HC: Why do you continue to write about hypothyroidism, even after you’ve been diagnosed and are on treatment?
Lizzy: With hypothyroidism, its not just us who suffer. Our children, spouse, family, friends and coworkers suffer. Because we aren’t living fully. I continue to write about hypothyroidism, sharing knowledge and my story, because if I can help one person change their life, I have helped dozens of people their world. If I can save one person from losing years of their life, or getting years that they would have lost, I have done my job in this lifetime.
"Once on the proper treatment, and eating moderately healthy, the weight just came off. Women can take control of their bodies by looking at their symptoms and getting the right treatment. When the body is balanced and treated well, it naturally works."
HC: How has treatment been like? Was it difficult at all? Have different treatments worked better than past ones?
Lizzy: Treatment can be a slow process. It’s not a “one size fits all”. It takes an open mind and willingness to learn. With hypothyroidism, it is like turning a big ship. People want overnight success and instant weight loss which doesn’t happen. But steady, weekly results can be expected during the treatment process when a person is on the right medicine. In addition, there are often conditions related to hypothyroidism which also will need to be treated such as adrenal fatigue, hormone imbalances, low iron, and even candida. So it’s an exploration to systematically work on each condition.
There are different treatment options. There is the standard T4 only medicine which some patients find effective. However many patients find T4 only medicine does not work fully, or experiencing side effects like hair loss.
For some patients, they report difficulty converting T4 to T3 (the active thyroid hormone). As a result many patients in the community choose a prescription Natural Desiccated Thyroid (NDT) medicine, which has both T4 and T3.
Even further, there are some patients who report that any T4 medicine, in any form does not work for them. As referenced in the book “Recovering with T3” by Paul Robinson. This medicine protocol is more complex, and involves taking T3 only medicine.
For me personally, I tried a NDT for many years and it seemed to work about 90% effectively. However, I believe my body had difficulty converting T4 to T3, and this past year I felt my hypothyroidism symptoms coming back without explanation. So I decided to switch from NDT to a T3 only medication. For me, this has been a great change and my body is doing so much better.
"With hypothyroidism, its not just us who suffer. Our children, spouse, family, friends and coworkers suffer. Because we aren’t living fully."
HC: How did your relationships evolve or change while you were living with hypothyroidism unknowingly and after you were properly diagnosed and treated?
Lizzy: Hypothyroidism and adrenal fatigue affected all my relationships. I had difficulty coping with social activities, and had very low energy. The brain fog made it hard to think clearly and hold conversations. I experienced mood swings, and at times I would feel very blue or sad. After getting treatment, I found I had energy to socialize more, and could easily join in on conversations. The mood swings went away, and the sad feelings lifted.
HC: How has sharing your story helped your hypothyroidism?
Lizzy: Sharing my story has helped my hypothyroidism because it makes me more aware of what I am doing and why I am doing it. In my effort to help others, I continue to research and find new information which helps me as well.
"Listen to your body. If something isn’t working, make a change. Don’t wait around! Life can be amazing."
HC: What advice would you give people who have just been diagnosed with hypothyroidism? What are some next steps they can take?
Lizzy: For someone who has just been diagnosed with hypothyroidism I would first say, take a deep breath. It’s going to be okay. Next, track your symptoms and body temperature until your temperature is in range of 98.4-98.6 mid-day. Make sure your doctor listens and will work with you. Listen to your body. If something isn’t working, make a change. Don’t wait around! Life can be amazing. Take things one day at a time. Be kind to yourself.
Join these Facebook community groups for hypothyroidism support:
This interview has been edited and condensed.