The Long Beginning- Part 3 Elisha

I started exercising for about 45 minutes almost every day because I noticed that I was gaining a few pounds and then losing a few within days.  I’d taken pride on my level of fitness and worked hard to stay fit. I never really got a ‘good’ workout and became even more lethargic and malaise for the rest of the day. It was a far cry from the days of my early 20’s, when I used to take a spinning class and work with a personal trainer in the same day. I wasn’t experiencing the release of endorphins that I can fondly recall. You would think that exercising would have positive effect on my body, but it was just the opposite.  I started having sneezing attacks, swelling, headaches, broke out in rashes, and actually spit-up blood on one occasion. I also wasn't obtaining any results from the months of jogging. This is coming from a woman, who actually studied dietetics in college and worked in fitness clubs. On many days, I jogged for 30 minutes and for months on end, and didn't deter from my strict diet.  
One day, after finishing my work-out, I noticed that my body had begun to swell and I was unable to pull my pants past my calves. I noticed that my neck felt tight, ached, pain in my legs, and my heart was racing. I felt exceptionally disoriented and confused. I started panicking and feared that I was having symptoms of a heart attack, stroke, or a blood clot. My symptoms progressed for about an hour and I finally decided that we needed to go to the hospital. We weren't to the highway yet and my symptoms came on stronger, so we stopped at the closest fire station. They took me to the hospital. My blood pressure was very high for me. The nurse was concerned that I had not ate any food, but I explained to her that I had multiple nutritional drinks that day, which had more vitamins, electrolytes, and minerals than an entire meal would have provided to me. It wasn't like I ran a marathon or even half of one. I jogged on my treadmill slowly for about 25 minutes and used the elliptical trainer for about 20 minutes. Since I often became bloated after meals, I typically didn't eat solid meals even three hours before exercising. My digestive system wasn't processing efficiently. While I insisted that I had consumed enough nutrition that day, she ignored my answers and decided to give me a sandwich, which had processed cheese and salty, cheap turkey. In the meantime, we discovered that both my sodium and potassium levels were low, which was odd to me because I had consumed a fair amount of electrolytes shortly before exercising.  I usually have slightly low sodium and although I do not add salt to my food, I'm surely getting enough of it in my diet. Anyway, they sent me home without providing me with anything other than a sandwich (oh, and a nice bill that arrived weeks later). I was still disoriented and confused until the next day. To this day, we are still baffled as to what caused that episode, however we do believe that it was related to my thyroid. 

So, I hadn't worked for months, but still had the extreme exhaustion, like the kind that people probably get when they have the flu.  My brain-fog made it hard for me to take up a hobby or be more than slightly productive around the house.  I disliked being so sedentary, but had no energy stored in my body.  It was a hard subject to discuss with family and friends because I did not really look sick. Some family members would ask me if I 'was just depressed.' I guess that was a fair question to ask, but I'd explain my symptoms as best as I could, but they'd always go back to the same question. This part was frustrating for me, but I've pondered on what I would have asked years ago to someone in my shoes.  It's not something that one can comprehend easily unless they've felt the symptoms, and that's not something that I would ever want them to experience even for just a day. I also did not like showing my symptoms around other people, so I was good at coming across as though I felt fine that day. I got anxiety when we ran in to friends or saw family and they wondered what I’d been up to, or how I was feeling. I couldn’t bring myself to tell them what was really going on inside of me. 
I started to research nearly every medical condition that related to many of my symptoms and found myself looking at autoimmune disease. Because my symptoms often 'waxed and waned', I had a strong premonition that my immune system was attacking my body. I also have read various theories on the internet regarding the relationship between Rh-Negative blood and autoimmune diseases. I found groups of people, who suffered from autoimmune conditions and had negative blood. The fact that an Rh-Negative mother can attack an Rh-Positive fetus is enough reason for Harvard to conduct studies on the connection of negative blood and the immune system.  Of course, I brought this up to my family doctor and she politely disagreed with my theory. 

Anyway, one day at the grocery store, I suddenly came down with the famous fatigue and dehydrated feeling, combined with confusion and brain-fog. I was at a newer store and felt vulnerable in my confusion. I quickly left in tears because I couldn’t focus on obtaining the items that I needed and worried that people would think that I was either on drugs or drunk. On the way home, I called my doctor and was prepared to unload to whoever answered their phone. I had been in their office just a few weeks prior and they ran more of the typical blood work, including the standard TSH level. Of course, the results came back as 'normal' on their one-size fit's all lab ranges. Why couldn’t they find what wrong with me?  I started wondering if there were other blood tests, which they hadn’t ordered yet. I spoke directly with the doctor and pleaded with her to dig deeper. She referred me to an endocrinologist.

In comes the endocrinologist. We had high hopes for that visit.  I informed them of my family history with autoimmune disease, and particularly the thyroid diseases.  I asked for the ANA test because I had read somewhere that many autoimmune diseases were identified if the test came back positive.  I understand now that ‘endos’ are clearly well educated on the topic of diabetes, but not so much on the thyroid.  At that time, I didn’t know a thing about thyroid testing, but I was still surprised that she didn’t raise an eyebrow when I told her about my family’s medical history. Apparently, she didn’t know much about thyroid testing either because she didn’t bother to look at any of it. So, out of that visit, we learned that I tested negative for the ANA, my sugar level is always normal and that my DHEA was ‘slightly low.’ DHEA is secreted by the adrenal glands.  DHEA levels in the body begin to decrease around the age of 30.  Though they decided to take no actions regarding the lower level, it is a good indication of an adrenal sufficiency issue.  Unfortunately, we did not know that it can also be linked to Hashimoto’s disease. The endocrinologist’s office couldn’t offer us a referral or even a recommendation for our next course of action.  I was starting to lose hope.

A few months ago, I started researching the thyroid gland again and stumbled upon http://www.stopthethyroidmadness.com/, which is an advocacy site for people suffering with mismanaged thyroid diseases. I read the first few lines of the website and a light bulb went off in my head:

“Well, here’s the skinny. Globally, informed hypothyroid patients have come to a unified conclusion that for 50+ years, they have been subjected to a thyroid treatment which didn’t work, leaving their lives compromised with lingering thyroid symptoms, besides adrenal stress and low levels of important vitamins and minerals. Could you, a friend or a loved one be a victim of this poor thyroid treatment? You betcha.” (stopthethryoidmaddness.com)

I looked at the list symptoms for the diseases and my jaw dropped.  I saw symptoms that I experienced often and had communicated to my doctors. Yet, I still gave my doctor credit (this was for the last time) because my TSH level had been ‘normal’ at the few times that she checked it. So, I was just about to disregard the website when this paragraph caught my eye:

“Did you know that there were decades of successful treatment for hypothyroid that involved nothing more than dosing you by symptoms?  The TSH lab didn’t even come into existence until the mid-1970′s. Today, the tables have completely turned. We now live in a lab-obsessed society, where most doctors completely ignore your thyroid symptoms and make your man-made lab results with the dubious “normal” ranges the holy grail of diagnosis. And diagnosis and treatment based solely on a “normal range” is a consistent failure, leaving millions of patient either undiagnosed, or undertreated.  Even worse, when labs are used, the majority of doctors are only doing the TSH (thyroid stimulating hormone) and total T4 to diagnose or treat you, neither which give an accurate clue to your hypothyroid condition. Additionally, ranges are made as if from God Almighty. They are not. So…when you visit your doctor, symptoms should be the conductor of the orchestra. Then use the right lab work, and knowledge of where results should fall, for more knowledge.” (stopthethyroidmaddness.com)

 Aaron and I decided to find an internal medicine doctor.  We found one nearby our home, who apparently had a good track record with thyroid illnesses. We quickly learned that she was not the doctor for us when she refused to allow Aaron to accompany me in the exam room. Her office quoted her as saying, “Absolutely not, under any circumstance could he come back.” She has a policy that no family members or spouses are allowed in the room with the patient and gave no reason other than something regarding “Side bar conversations.” That’s all we needed to hear and walked out of that office. Yes, it was frustrating and I was quite ill, so I was looking forward to getting the blood work handled that day. We started conducting research on thyroid doctors in our area. Throughout the next few weeks, we discovered the awful experiences that many patients with thyroid diseases have with family doctors, endocrinologists, internal medicine doctors, etc., I was astonished at the amount of uneducated, stubborn, lab obsessed, and just pin-headed doctors that choose to work in medicine.  Meanwhile, I was beginning to not just suspect that I had a thyroid disease, but I wanted to look for evidence on my own, especially when I got very ill and had what I can only explain as a reaction from eating almost an entire bag of edamame (movie snack recipe from Pinterest), and I found out that studies have shown that soy can aggravate thyroid diseases. I am not allergic to soy either. 

A few weeks ago, we were frustrated that we weren't experiencing any luck in our research to find a functional doctor, and I was going through a rough patch that I couldn't seem to shake, so we decided to purchase the proper blood work for Hashimoto’s disease on our own from an online store called Private MD (we highly recommend them as they are professional and economical source to purchase standard lab tests), so I went to our local LabCorp and completed the tests.  I got the results two days later via email. My heart was pounding and my hands were shaking because I knew that if the antibodies did not appear in my blood, then I was officially crazy, and I would have checked myself in to the nearest mental institution (ok, not really). Sure enough, I read through the results and all that my eyes could focus on was the word ‘HIGH’ listed multiple times. I immediately let it all flow from me. Years of suppressed tears started rolling from my eyes. I was crying because I was relieved.  I was crying because I knew it was something that did not have a cure. I was crying because the doctors did not bother to screen me for the disease.  Aaron was on his way to the store and when I called to tell him the news, he turned right around and came home and consoled me. 

My Thyroid Peroxidase antibodies (TPO) were at 272 (reference range 0-34) and Antithyroglobulin antibodies were at 270 (0-40).  In addition, my Reverse T3 was 49.5 (13.5-34.2).  My TSH was at 3.2 and considered ‘normal’ (0.4500-4.500) by lab obsessed doctors eyes, however most ‘healthy’ adults walk around with a TSH of about 1.0 and many patients treated with thyroid hormones report symptoms when their levels are 1.5.  As a result of indepth reesearch in 2003, the American Association of Clinical Endocrinologists (AACE) recommended  that the ranges for TSH levels be altered to .3-3.0, however few labs have adopted the suggested levels. Here's a great ARTICLE  written by Mary Shomon, an internationally known patient advocate and the the author of The Thyroid Diet: Manage Your Metabolism for Lasting Weight Loss. 
The majority of these lab tests were not available until the 1970’s, and patients were primarily treated based on their symptoms. Now, it's the opposite. The challenge that many patients have is finding doctors that will look at them from a functional prospective and believe that everyone’s ‘normal’ cannot be predicted by our lab obsessed society. So, obviously I have antibodies that are attacking my body and since I want to be across the board about lab results, I am not concerned with what the levels are in regards to the ranges, but I am concerned that I have anti-thyroid antibodies and that should never be normal. 

So where do we stand today?  We are anxiously awaiting an appointment with a new doctor that we have read excellent reviews about and are more than willing to travel an hour to see him. I am nervous, anxious, and crossing my fingers that he will allow me to be involved in my treatment and work with us as a team.

I must give a shout-out to the fabulous ladies from the Thyroid Sexy Facebook page.  They are an interactive advocacy group, which was started by Gena Lee Nolin, who is a former actress from Baywatch and she has Hashimoto’s disease. I asked them about my results and they gave me some awesome advice.  If you’re reading this blog because you’re looking for answers, support, or hope, then you’ll want to head over to their page too-http://www.facebook.com/thyroidsexy.  J