Today's post is a serious one. As I share more with you about who I am, so you get to know me and my heart I want to touch on another area, health. Some of what I will talk about here is my journey toward a more healthy life. One thing I have struggled with for more than 35 years is Hypothyroidism and Hashimoto's Thyroiditis.
I was finally diagnosed and put on medication 28 years ago after going to many Doctors who told me I was fine and just needed to eat less and exercise more. They did no blood tests, no other tests, just heard my complaints and gave me that advice. I will never forget the feelings of hopelessness and worthlessness that I felt during those times. Looking to the "experts" for help and being told it was all my own fault. I had one Dr who actually said there was no such thing as "glandular" problems, it was just a fat person's excuse for being fat. I had one Dr who asked me to keep track of my food for two weeks and when I brought it back to him he called me a liar. He told me there was no way I could be gaining or maintaining the weight I was at if that was all I was eating.
Just some of the symptoms of Hypothyroidism
One of the employees at the gym I worked out at expressed concern one day over the fact that I wasn't losing weight despite a very rigorous workout schedule. She said to me, "I watch you work out, I see how often you come in, you couldn't eat enough to maintain this weight with the workout load you carry. Something has to be wrong." I went back to the Dr and they told me to eat less and exercise more.
I finally gave up. My health continued to decline and I continued to gain weight. Others expressed concern as well that they could see I wasn't eating enough to maintain my weight, along with the other complaints I had, one being that I felt like I had constant PMS. A few insisted I should see an endocrinologist. But I had long since given up on looking to Drs for answers. My last try had been met with a Dr who told me the standard, eat less and exercise more. At that point I was living on one slice of toast and one can of Pepsi a day. The toast to ease the nausea from no food (and quite probably the hypothyroidism although I didn't know it at the time) and the Pepsi for energy. I broke down crying and said, if I eat less I will die. She looked at me with contempt and said, "Well obviously that's not true, look at you!" I was 5' 4 1/2" and a "whopping" 145 pounds! I walked out of her office sobbing uncontrollably.
Finally in January 1986, I was sitting in the office of my daughter's doctor and saw a magazine with a headline that grabbed my attention, "PMS or Thyroid Disease? Why Thyroid Disease So Often Goes Undiagnosed" I snatched that magazine up as if my life depended on it! I read through it and sure enough it listed every single symptom I had. I decided to give it one more try and made an appointment with an endocrinologist.
My appointment didn't go very well, he listened to me, did a cursory exam and announced that he didn't really think anything was wrong with my thyroid, rather he decided I was depressed, but he would go ahead and do a blood test, just to be sure. A few days later he called me to get to the lab ASAP and get another test. Two days later, on a Saturday, I got the call I will never forget. He said, "I need the phone number to the nearest pharmacy, you need to pick up these pills and start them TODAY! Do not wait one more day before you begin this medication!"
I wanted to take that bottle to every Dr who had ever humiliated me and wave it in their faces. HA! See, I was right! But what if I wasn't? What if they were right and it was all a mistake and it really was just because I was a bad person who ate too much and didn't exercise enough? So I waited each year with baited breath for my blood test results. I waited to hear that there had been a mistake and it really was all my fault. Yes, my self esteem had taken quite a beating.
In the beginning things were good. I had more energy and lost almost every pound of excess weight within 9 months of my diagnosis. Then 18 months after my diagnosis I had a life altering back injury and without the ability to be active my energy began to drop and the weight creeped back on. I thought it was all because of my back injury but I now know that it was because Thyroid Hormone alone was not enough. Yes in the beginning I felt better because of how horrible it had been, but as I evened out, I was still far from healthy or normal.
Some days the exhaustion my body feels makes me need to lie down so badly I actually consider this option.
It has been a very long and tedious journey to this point. Doctors still don't get it. At least not the ones I have seen. My last visit to an endocrinologist was 5 1/2 years ago where I was met with a frustrated, your numbers look fine, why are you here? Despite the fact that even ignorant Drs recognize that you should be seen by an Endo Dr every year and I hadn't seen one in at least 5. Despite the fact that my primary had referred me because he didn't think my numbers were "fine". She ran another blood test, announced, "You're within the normal range, if your Dr wants to adjust your meds he can. It doesn't matter." and exited the exam room. I was embarrassed yet again and decided to give up. Again. Still.
There is much more to my story. How my early interactions with misinformed Doctors caused an eating disorder as I struggled over the years to eat less and to starve myself enough to "break my body" and "force it to stop storing fat". A miscarriage that I now believe was related to my undiagnosed Thyroiditis. My discovery years ago that I had estrogen dominance and it's impact on Hypothyroidism, which my Doctors completely ignored and looked at me like I had three heads when I tried to discuss it with them. How I literally had to diagnose myself with Hashimotos and then the Dr confirmed it, 12 years after my original diagnosis of hypothyroidism. (and thanks to the internet!) How when he confirmed it he literally said, yeah you have Hashimotos see you in six months as he walked out the door. And so much more. I don't know how much of those pieces of my story I will share. But I'm sure I will touch on some as I begin to explore this puzzle.
Misinformed Doctors caused me more harm than possibly anything else about my disease.
Today I am learning so much more about diet, how important it is to avoid certain foods and to eat certain others. How important it is to go gluten free. How autoimmune disease affects so much of our health and how to live with one. How Hashimotos can cause Periodontal Disease and tooth loss. How Hashimotos causes depression. How many different types of medication there are. How very much my Hashimotos affects every aspect of my health and life, not just my weight. Just today as I was writing this I learned three new things about Hypothyroidism that I hadn't known after 35 years of living with it.
It isn't easy to put the pieces together because along with the extreme fatigue I sometimes deal with, comes a certain amount of what they call, "brain fog", which affects the ability to sort through the mountains of information to find what is actually true and what is not. But I'm just beginning this phase of my journey and will be sharing about that as well sometimes.
I hope you will find this journey helpful, interesting and maybe even inspiring as well.
Blessings,
Colleen
Also, please visit my Giveaway post and enter to win a copy of A Woman After God's Own Heart. You can find it here:
http://craftilady.blogspot.com/2014/11/official-blog-launch-giveaway.html
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A Little R&R
http://www.rosilindjukic.com/2014/11/4-things-ive-learned-about-growing-blog.html
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http://chickadeehomestead.com/2014/11/homestead-blog-hop-4.html
