Yes, it’s long and detailed, but it’s a remarkable story of having multiple illnesses and poor diagnoses for years, finally finding desiccated thyroid, treating low cortisol, discovering Celiac disease, and finally living again. Very worth it to read!
After moving to the US at age 20, my diet changed. I began to eat a lot of sandwiches and pasta. At 23, I began experiencing chronic constipation. I had every GI test under the sun, but nothing showed a cause. I weighed 95 lbs all my life and wore a size 1, so I dealt with it — for the next 23 years, before discovering the solution.
By the time I was 36, constipation was so bad at times, that I was often unable to have a bowel movement for 10 days at a time. Laxatives had stopped working. I’d also started to struggle with my weight, out of nowhere. I started working out intensely and managed to keep the weight off barely. But if I stopped working out for even a couple of days, I gained and struggled again. Working out, I began to experience leg cramps and fatigue. In addition, I would find my left leg had gone to sleep after sitting even for a few brief moments, but I wouldn’t be aware of the problem until I stood up.
When I discussed my symptoms with a doctor before surgery for a dental issue in 2001, and asked if it were possible something was wrong with my thyroid, she tested only TSH, which was 3.9 (high end of the range was 5.0). If only I’d known better at that time! I’d always thought doctors and veterinarians were somewhat supreme beings who could look at a person or animal and fix them up. The summer I turned 38, I began to realize that vets were anything but when one almost killed my beloved 16 year old cat through her lack of knowledge.
Taking my cat’s health into my own hands, I began to research everything I could find, vowing never to put my complete trust in a vet again. The more I learned about my cat’s hyperthyroidism, the more I read articles about human thyroid conditions. I began to wonder again if I was hypothyroid. Working out became difficult and exhausting, and the weight began to pile on. The chronic constipation turned into chronic diarrhea. By the next summer, when I was 39, I could no longer fight the battle of the bulge. I’d gained 25 lbs. My hair was falling out and/or breaking off and just looked terrible. My periods stopped completely. By the end of the year, I had severe foot pain and leg cramps and began to experience difficulty walking. I gained another 40 lbs in less than 6 months. My skin was like that of a snake; my hair was tangled, dry, brittle and was falling out. I didn’t have the energy to comb it, let alone blow dry it. I didn’t shower every day due to lack of ability to stand up for very long. I had acid reflux and diarrhea 20 – 25 times a day. I couldn’t eat anything but chicken broth, which brought the diarrhea down to 8 – 10 times a day. That was a good day for me. I was constantly nauseous. I developed nasty painful huge boils on my breasts which then exploded and leaked pus for days. I was constantly covered in a rash and very itchy.
I went to another doctor and she again ordered blood tests. She said my TSH was “slightly” high, but would come back down on its own. It was 6.5 and the reference range went to 5.0. Little did I know! She put me on an antidepressant, a drug for IBS, and one for acid reflux. Nothing worked. She sent me for x-rays of my foot and leg. They came back showing nothing, so she decided depression was causing my pain. She said I had too many problems and was just too difficult to help! How discouraging.
I moved into the guest room because I got up so many times a night with diarrhea. I spent most of that year in bed getting worse and worse. My husband said he’d look in to ensure I was still breathing, and if I was awake, he’d offer me chicken broth. I couldn’t walk and I couldn’t stand up. In the mornings, my feet were so crippled that I crawled to the bathroom, and even that hurt. I couldn’t go downstairs without help. My feet would seize up in the middle of the night and I’d wake up screaming. When I tried to stand, I fell down. When I tried to walk, I screamed in agony. I was constantly cold. Sitting down, my legs and/or feet went to sleep and became numb. I stopped talking to friends and emotionally gave up and thought about ways to end my life daily. More doctors and more antidepressants were prescribed. Some made me climb the walls, some made me sleepy. Nothing helped.
I tried another doctor. She suggested I could be in premature menopause. Since I hadn’t had a period in 11 months, she said to wait one more month, and then, we’d declare it menopause. But my labs may take a year to catch up. And even if it was menopause, she had no suggestions other than HRT, which she said would be too risky for me since my mother had breast cancer twice.
A month later, I got a period, but it never stopped — and ended up continuing for 5 months! Blood would literally gush out of me from time to time and spill on the floor. The doctor sent me for ultrasounds and they couldn’t find anything wrong with me. How can a person bleed like that and for that long and have nothing wrong? I went to a gastroenterologist about the diarrhea who recommended a colonoscopy, and an endoscopy. I was told they were normal. I saw a commercial on TV where some guy was complaining about going to the bathroom 7 times and thought “If ONLY!” I’d have given my left arm to have diarrhea that little! How could nothing be wrong with me? Even though I didn’t eat, I continued to gain weight. How could that be?
I just felt hopeless. I would have killed myself if it wasn’t for my cat who needed me for his health conditions. Actually, I planned to do just that when he finally passed away. I tried another doctor who recommended yet another antidepressant. That one would have been No. 7 for me. In a rare moment of bravado, I told her I’d take it, but only if she’d recheck my thyroid, and this time, check T4 and Free T4 — which I knew about from my cat’s condition. She agreed.
A few days later, her nurse called to tell me I needed to pick up a prescription for Synthroid immediately and start on it. My TSH was 18, and my Free T4 (the only thing tested) was >0.01. I’d been right all along: it was my thyroid. By this time, I’d gained a total of 93 lbs (for a weight of 187 lbs), which was almost double my original weight and I was growing out of a size 20.
For the first couple of weeks on Synthroid, I almost felt human again. Then, nothing. I saw an endocrinologist but she didn’t have any idea why I was feeling so poorly. I learned of another endocrinologist who prescribed Armour and really hoped for a miracle. It was a 5 month wait for an appointment. In the meantime, the 5 month long period ended, and I didn’t have another period for 3 months. When I had one again, it lasted 3 months. In the middle of that, I’d gone to a different gastroenterologist. He told me I was a walking textbook case for Celiac Disease — which I’d never heard of. He sent me for blood tests, telling me if I had Celiac, all I’d need was a simple dietary change and I’d feel better within 6 – 7 weeks. He also sent me for an abdominal ultrasound, which caused diverticulitis and landed me in the hospital. I developed pneumonia in the hospital and they couldn’t figure out what was wrong with me. The gastroenterologist told me I was just too difficult of a case and I didn’t have Celiac, and I should go to the Mayo or Cleveland Clinic. He was angry that I wasn’t textbook. I checked myself out against medical advice in complete frustration.
Finally, I saw the endocrinologist who prescribed Armour. He told me he’d be glad to switch me to 1.5 grains of Armour. Great, I thought. Well, I might as well have continued on Synthroid because I felt no better. There was ONE improvement. I began to have somewhat regular periods again — not always once a month, sometimes twice a month, sometimes once every 6 weeks, but at least I was having them. He added Cytomel months later. That didn’t help. He took me off it, and begrudgingly increased my Armour dose to 2 grains. That didn’t help either. The chronic diarrhea had caused painful hemorrhoids. I went to a surgeon to see if they could be surgically removed. That was the very worst day of my life. I couldn’t remember my own phone number and had to ask my husband. I sat there with the colonoscopy report in my hands bearing the gastroenterologist’s name and I couldn’t think to look at it. I couldn’t remember anything and could barely speak. The surgeon and his nurse began speaking very slowly and clearly to me. They must have thought I was retarded.
That was the last straw. I’d never been so humiliated in my life. I’d always been an intelligent person but I was in such brain fog, I barely knew my name.
About a year before this, someone on a cat health group had mentioned the STTM site to me. I’d looked but thought it seemed very militant calling doctors and the way they treated people “madness”. Firmly rooted in my scientific research for my cat’s illnesses, I just wasn’t ready. But on that day, in September 2006, I was ready! It was “do or die” for me. If what was suggested didn’t work, I was going to end my life.
I began increasing Armour as recommended. Nothing happened. Reading that most people needed 3 – 5 grains, I figured I’d go to 4, double what had been prescribed. If it wasn’t working then, I’d give up. Lo and behold, a few days after I got to 4 grains, I could walk, I could stand, I could talk, I could think. It was a miracle! Within 3 months, I lost 15 lbs, not doing anything to achieve it. Within 7 months, I’d lost 37 lbs.
I wish my story ended there, but it didn’t. I still had diarrhea. And a few months after getting to 4 grains, I began having terrible PMS with fatigue and very sensitive breasts. After a few months of that, I heard of a doctor who worked with patients by phone and consulted her. She put me on high dose progesterone and told me to increase Armour by 1/4 grain.
I was also under a lot of stress at the time because my husband’s health issues were rearing their ugly head, but I was still too sick to see it. Which one of those issues caused adrenal fatigue, I don’t know. But I crashed seriously and all my hypothyroid symptoms returned. Armour was not able to work because my cortisol was so low.
With the caring help of Deborah and Val from the STTM forums, I started on hydrocortisone, backing my Armour dosage to 2 grains for a while. That didn’t make me happy at all. I knew what it felt like to be “human” again on Armour, and so, hydrocortisone was a means to an end: getting back on 4 grains of Armour.
4 months later, I was able to wean off hydrocortisone, and I was back to 4 grains of Armour. I realized it just wasn’t enough, and kept going to 5 grains, where I felt fantastic. That is, except for the diarrhea — which I still hadn’t been able to fix — and PMS — but at least I could walk, talk, think! In July of 2008, I read one of Dr. John Lee’s books and started on the brand of progesterone cream he made while alive, and which his family continues: Progesterall.
Also, while researching something else, I happened upon a post on a Celiac forum by a woman who was telling my story about GI issues. She mentioned a genetic and stool test from Enterolabs which had diagnosed her as having Celiac, where blood tests and endoscopy had failed. I decided to become gluten-free and ordered the test. Sure enough, I have Celiac Disease.
And that brings me to 2009. I currently weigh 107 lbs, and am working out to lose the rest of my weight. I have a little extra weight left around my midsection, but I’m not obese anymore, and that’s the only reminder of what I went through. I wear a size 2, and fit into some size 1s. I don’t have leg or foot pains anymore, and I can stand, run, work out, and do whatever I want to do. I don’t have acid reflux, constipation or diarrhea (other than when I mistakenly consume gluten). My skin is soft and supple, my hair is silky soft. Strangely enough, even the carpal tunnel syndrome I’d developed along the way is gone.
I’m now 44. I feel alive and life is worth living again. Without STTM, my life would have been over, and I’m eternally grateful to all those who have told their stories and given me advice along the way. My beloved cat finally passed away 6 years after his troubles began in December 2008. He was 22. My research gave him many years of good quality life, and ultimately, through that research, he helped me to find a way to live again and regain quality of life. It was through a cat group where I looked for help for him that I found out about STTM and was able to help myself. Is it coincidence that he waited until I was better to leave this world? I think not.
