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The first indication that something was wrong with me was in 2003, at the age of thirty, when I started my period two weeks early. Since I had experienced normal gynecological health all my life until this point, I didn?t consider it alarming, and I figured it was a fluke. I finally went to the doctor when I started bleeding again just two weeks later, and I was having worse than usual menstrual cramps. I went to my doctor and his immediate response to my symptoms was to put me on the birth control pill in order to control the bleeding (which is a classic solution, in my experience, from uninformed doctors).
My entire journey of suffering from hypothyroidism could have been avoided at this point, had my doctor asked the question, ?What is causing this healthy, fit thirty-year-old with perfect gynecological history to start bleeding abnormally?? Unfortunately, my doctor did not ask this question (and neither did I). Instead, he continued to prescribe a variety of birth control pills, each one stronger than the last, because they all kept failing to control the abnormal, excessive bleeding. But I trusted my doctor?s advice?a mistake. Throughout the many months I tried the various birth control pills he prescribed, I rapidly gained weight and constantly felt as though I was in a bloated, menstrual state. This made no sense because I exercised regularly, and I had what most people would consider a fit physique. I am 5?2?, I was 110?115 lbs, 16% to 17% body fat, and before hypothyroidism hit me, I exemplified the image of health and fitness.
Someone suggested to me that I might have a thyroid problem, so I went back to my doctor to have him test my thyroid?another big mistake. Here was a doctor who didn?t even think to inquire about the root cause of my bleeding, and here I was trusting him to take appropriate blood tests. Yikes! In retrospect, that should have been a major red flag. My doctor tested my thyroid incorrectly by only testing my TSH. He said the TSH was within range, I did not have a thyroid problem, and I just needed to exercise more and eat less, which I thought was impossible because I had been working out two hours a day and eating 1,200 calories or less; yet, I was continuing to gain weight. He looked me in the eye and told me, ?Well, it?s not your thyroid.? Had this doctor been knowledgeable enough to test my Free T3 and Free T4 levels at the time, he would have concluded that it was in fact my thyroid?I was seriously hypothyroid?and I might have been spared the horrendous experience of full-blown hypothyroidism.
It took me two years from this point to get diagnosed properly.
My symptoms progressively worsened. I was freezing all the time, even in hot weather; my temperature was 96°F versus the normal 98.6°F. I was exhausted and very depressed. I started to get acne, even though I had flawless skin my entire life. I was unknowingly very anemic with restless legs; I was bloated, heavy, and miserable in every way with constant menstrual bleeding and cramping. Life was horrific, and I barely left my apartment. I cried multiple times a day; I could hardly stand being in my own skin. I had zero control over my body and symptoms. I kept going to doctors who continued to tell me that there was nothing wrong with my thyroid.
One of the worst moments during this time was on a hike with a friend, I started to experience such severe abdominal cramps that I thought I had to take an emergency bowel movement. I walked into the woods, took down my pants, assumed the squat position, and huge blood clots fell out of my vagina onto the ground. I write this with tears in my eyes, recalling how frightened and horrified I was about my future. It was one of the scariest days of my life.
After the incident, I saw a gynecologist who misdiagnosed me with PCOS. Did I have PCOS? No and sort of. My state of hypothyroidism threw off all of my sex hormones so drastically that my pelvic ultrasound looked like the classic profile of someone with PCOS (there were sixteen or so cysts in a ring around one of my ovaries). This scenario is a perfect example of why anybody with a gynecological problem or low levels of sex hormones needs to get their thyroid tested accurately. Because the thyroid is the master gland affecting every system in our body, including our hormone levels, a state of hypothyroidism can lead to something else that will become a disease the person wouldn?t have gotten otherwise. My hypothyroid state eventually led to the formation of a polyp on the lining of my uterus and also a uterine fibroid. Because the polyp was on the lining of my uterus, it kept poking the lining and making it impossible to stay intact, which caused more bleeding and constant vaginal leakage (not cool!)?ultimately leading to severe anemia. And my depression only got worse.
I went to so many doctors and spent thousands of dollars on specialized MDs who didn?t take insurance?some were famous authors and hormone doctors to Hollywood celebrities. At some point along the way, you would think a doctor would have questioned my iron levels based on the amount of bleeding I was experiencing from my gynecological issues, but no one did. Finally, there was one doctor who tested my Free T3 and Free T4. It cost me $600 for that office visit (not including labs) to have a doctor finally test my thyroid correctly. I was relieved to know, at last, that a thyroid problem was causing all of my health and weight issues.
Below are the thyroid labs that took me two years, thousands of dollars, and an insane number of doctor?s visits to have a physician finally declare, ?You are very hypothyroid.?
As the above values show, if an endocrinologist had tested just my Free T4 and TSH (which many endocrinologists do), they might have concluded, ?Your thyroid looks fine.? These labs show how critical Free T3 testing is. This horrifically low level of Free T3 directly corresponded with every symptom I was suffering from. I retested six weeks later, to see if things were still the same, before starting thyroid hormone replacement.
After this two-year journey, I was not only broke but also disheartened by so many doctors hurting, not helping me. So I began to search the internet 24/7 to find answers. Life had ground to a halt, and my days were filled with physical misery, existing in a state of disease that I could not control. The only advantage I had in my quest was that I worked from home and was able to rest when I needed to. I had gained more than 40 lbs, and that was with exercising daily. (In retrospect, exercise was something I should not have been doing.) Thankfully, my internet searching led me to learn about ferritin and how essential it is. I got tested and my ferritin was 10 in a range of 10?150, which meant I was severely anemic and had restless legs. I learned that if I didn?t improve my iron levels, no amount of NDT (natural desiccated thyroid) was going to help me, and I would face difficulties raising my NDT dosages, which would halt my progress.
At this point in my journey, I could not afford any more doctor?s visits, but based on my experience with doctors leading me in the wrong direction, testing me incorrectly, and misdiagnosing me, I also did not trust them to solve my hypothyroidism. So, I took my health into my own hands and started down the path of treating my own hypothyroidism with NDT?without the help or the assistance of doctors. I relied solely upon my own research and intuition, combined with the advice and wisdom of fellow patients from patient-to-patient online chat groups.
In January 2006, just six weeks after seeing my low levels of T3 and ferritin, I started taking iron. I simultaneously started taking NDT. I started to feel improvements a couple of weeks later: my restless legs started to subside, my heart palpitations began to dissipate, I had more energy, and my brain function started to kick back in. After a couple of months on NDT and iron, I was feeling better and better as every day passed. After a full year on NDT, my hypothyroid symptoms vanished and life returned to normal. I also had surgery to remove the polyp from my uterus lining, and soon after the surgery all of my gynecological issues were completely resolved. I was feeling normal again! I spent the next six to seven years on NDT feeling wonderful (although I still felt obsessed with food and found it a struggle to maintain my weight loss, because I had not yet discovered paleo/primal living). During those years on NDT, whenever I cried, it was out of gratitude for finally feeling like a normal human being again! Yeah for NDT!
In 2011 I began to feel the onset of hypothyroid symptoms: Inability to keep off weight, rapidly gaining fat around my stomach area and waist, dry cracked skin, inability to focus, brain fog, and depression. You might assume that because I previously experienced the perils of hypothyroidism that I would recognize hypothyroid symptoms right away, but I didn?t even consider it. I had been living well on NDT for many years until this point, so it seemed impossible that my symptoms could be related to thyroid.
My symptoms got worse, really fast. My hair was falling out and felt rubbery to the touch. I started to get very constipated and bloated. I was exhausted no matter what I did or how much I slept. I was overwhelmed by small tasks, and became extremely sensitive to light, sound, and smells. My face was puffy every morning. My legs were heavy and bloated. I can?t even recall how many times I sobbed in the shower; I was washing a bloated, fat body that was foreign to me. I would even cry on the toilet?I had gained so much weight that I struggled to reach back to wipe myself (a horrible experience to say the least). The weight gain and bloat seemed even worse than the first bout of hypothyroidism. Depression came back with a vengeance.
I went to a doctor, who I had found after getting myself optimized on NDT. Even though I had successfully treated myself for years without the aid of doctors, during my six to seven years on NDT, I kept searching for a doctor to legitimize what I had been doing without one. About three years in to taking NDT, I found what I was looking for. Not only was this doctor impressed with my story of self-treatment, but also I was able to educate her about the importance of ferritin (which she was unaware of), and she began implementing ferritin tests with her other thyroid patients. I thought I had scored the coolest doctor on planet Earth! A doctor who listened, wanted to help me, wanted to learn, and was confirming my own strategies? Jackpot! I finally felt ?legit? about my thyroid treatment and health. As you might imagine, I referred a lot of people to this doctor. I trusted her, because when I first met her, she was open and willing to admit that she didn?t know everything about thyroid health. She also seemed to understand NDT dosing and was not worried about my suppressed TSH.
Well, after experiencing the second onslaught of severe hypothyroid symptoms, I went to see that doctor.
I was a bloated, fat mess sitting across from her as she scanned her clipboard, ?Your blood tests, your thyroid tests…they all look great. I don?t know what to tell you about the weight gain and brain fog.? And then she proceeded to give me exercise and nutritional advice that fell on deaf ears (I was already exercising and restricting calories). I evaluated my blood results too. From what I could see, my labs looked normal, but I noticed that the T4 was higher than usual. At the time, I didn?t know this was a red flag. I left her office confused about what was causing my symptoms. A myriad of hypothyroid symptoms came crashing down on me after that; it was so severe that I didn?t feel as if I was on thyroid hormones at all! I felt just as terrible as I did before I was diagnosed many years prior. Except this time, I experienced no abnormal menstrual bleeding. Like my doctor, I too eliminated the possibility of my symptoms being related to thyroid, but I was determined to find out what was wrong with me. The fear of possibly getting another gynecological problem drove me to research my situation 24/7 again, and I eventually suspected that I might have a Reverse T3 problem.
I went back to my doctor and asked her to test Reverse T3 along with Free T3, TSH, and Free T4. She didn?t understand Reverse T3 but she ordered the tests for me anyway. The blood results proved my suspicion, I was experiencing a major Reverse T3 problem. I went back to see my doctor with a folder packed with research on the subject and plans for how to fix it. I explained to her how I had reached the diagnosis and told her that I wanted to take T3-only to fix my Reverse T3 problem. She looked at me, very annoyed, shook her head and said, ?Oh Elle, this is just too complicated.?
I felt so betrayed and angry in that moment. I started sobbing. I stood up and said, ?Let me show you something.? I stripped down to my underwear and stood in front of her. I had gained so much weight that my bra barely covered my nipples?it resembled a very skimpy bikini top that a Playboy bunny would wear to a pool party.
?Look at me. I?m huge! I keep gaining weight, I can?t think, I?m depressed, I?m exhausted, and I have all the other classic signs of hypothyroidism, dry cracked skin, skin thickening. I am seriously hypothyroid right now! This is too complicated? But medical school wasn?t complicated? Organic chemistry problems on the MCAT were not too complicated, but this is too complicated!? Please help me! I need help!? She looked at me as if I were crazy. ?I?m sorry I can?t help you with this, but I will try to find someone who can, and I?ll have my office call you with a referral.? (I never got a referral even after calling the office three more times.)
Below is my blood work from when I was on NDT but had developed an RT3 problem and had become severely hypothyroid a second time, because the T4 in my NDT was being converted into the biologically inactive Reverse T3. As you can see, my Free T3 is high and could potentially look normal for someone on NDT (except that I had hypothyroid symptoms). My high Free T4 was a red-flag indicator that I might be experiencing a major Reverse T3 problem. The ratio between my Free T3 and Reverse T3 confirmed that I did indeed have an RT3 problem.
Free T3/Reverse T3 Ratio: 20 or higher is considered healthy.
I walked out of the doctor?s office and sat in my car, sobbing. Here I was again, in the same position as I had been seven years prior, when no one in the medical community would help me. I felt so alone in that moment, because I had a gut feeling that I was going to be on my own again for the second time with hypothyroidism. My gut feeling was confirmed when, after pleading with thyroid specialists and doctors in Los Angeles to help me, not one of them would. The vast majority of the medical community was, and still is, clueless about diagnosing and treating Reverse T3, especially with T3-only.
The doctors I spoke with were very afraid of T3 for no apparent valid reasons. Not one MD I spoke with prescribed T3 without T4 to their patients, and most of them warned me that T3 was very dangerous and that I could give myself a heart attack. I didn?t believe them. I started doing a ton of research on T3 and Reverse T3 and discovered an online group dedicated to the subject, which I joined. I received amazing emotional support and invaluable advice. After learning about the myths surrounding fears that doctors have of using T3-only, I became confident that T3 was not going to kill me. In fact, I became quite confident that T3 would accomplish the opposite?T3 would save my life.
It did. And it still does.
Because I had the luxury of working from home, I was able to closely monitor my blood pressure, pulse, temperatures, and symptoms without worrying about onlookers. I took detailed notes on everything I did and everything I felt. It took about ten weeks to start feeling normal again, but I still struggled to lose the excess weight I had gained.
How a Paleo/Primal Lifestyle Was the Final Key to Healing
After sixteen months on T3-only, I finally adopted a paleo/primal lifestyle. I knew I had discovered something unique when not only the weight started falling off me, but I was able to reduce my T3 dose significantly. Most importantly, food addictions, food obsessions, and unhealthy cravings disappeared! I couldn?t believe that. From teenage years on, I always felt a struggle with food and diet. Even though I had once achieved a body I was thrilled with before hypothyroidism entered my life, I achieved it through conventional low-fat ?eat three to five meals a day? diet wisdom, and I always felt as though I had to sacrifice, suffer. And frankly, I thought it was the only way to achieve ideal body composition because every diet book I read said the same thing. When I had been on NDT, I had managed to lose most of the hypothyroid weight, but it always felt like a struggle to keep it off. I was always thinking about what I was going to have for my next meal, I was hungry every two to four hours, and I always felt I had to use extreme willpower with portion control and everything else regarding eating. I honestly felt as if I was cursed because I saw other friends and how they ate; it didn?t seem as though they had the same issues with feeling obsessed with food. I could not understand why I did.
After going paleo/primal and getting fat adapted, my former food addictions and obsessions all made perfect sense, and most importantly, they disappeared! When I strictly adhere to a paleo/primal lifestyle, I have zero issues with food obsessions and sugar cravings. Although if I veer off course, they come back. In fact, I rarely think about food until I am hungry, whereas I used to think about food all the time! It was a relief to know that there wasn?t something inherently wrong with me after all those years of struggle. I was simply eating against my genetic programming, against my DNA map. The evidence is overwhelming in favor of a paleo/primal lifestyle for keeping adrenal glands in check, managing blood glucose, and eradicating food addictions/obsessions. And adopting the lifestyle is what has kept me healthy, vibrant, and fit even after years of battling hypothyroidism!
My Journey in Pictures
Before I got hypothyroidism (2000?2003) I was very fit, lean, feeling great in my body and averaging between 110 and 115 lbs. I was a size 2?4.
The onset of hypothyroid symptoms began in the fall of 2003. The symptomatic weight gain is especially apparent in my face in these photos from a wedding I attended in the fall of 2004. I was miserable behind that smile. I had gained more than 40 lbs, even though I was exercising one to two hours a day.
In January 2006, I started NDT, and it took about a year for me to feel good in my body again and simultaneously correct low iron and adrenal fatigue. These photos were taken between 2007 and 2010, when I was on 3?3.5 grains of NDT, which I multi-dosed twice a day. I was convinced that I had solved my hypothyroidism forever.
I didn?t know my body was brewing an RT3 problem at the time, but this (photo on the right) was two months before the onset of full-blown Reverse T3 hypothyroidism. I was starting to get bigger and more bloated and was having trouble keeping weight off.
However, the photo on the left, taken July 26, 2012, is after four months on T3-only. It took me three of those four months to fix my Reverse T3 problem and feel better. In this photo, although I felt considerably better in every way, my weight had still not budged much (only 10 lbs down). I was doing hot yoga classes five to six days a week (which I later realized was chronic cardio and part of the problem).
The picture below (taken in June 2015), is after three years on T3-only and one and a half years after going paleo. As you can see, it was the combination of correctly treating the reverse T3 problem AND adopting a paleo/primal lifestyle that was the real solution to sustaining optimal health.
Although I wish I hadn?t gone through any of this, I am glad I did. I not only have a profound appreciation for feeling normal, but it is my hope that all of my mistakes and misdiagnoses along the way will help other people who are worried they might never be well again.
So if you or anyone you know is suffering (or suspects they are suffering) from thyroid-related dysfunction, purchase a copy of my book, The Paleo Thyroid Solution, for a comprehensive guide on how to take charge of your health and heal from the inside out.