Adventures in Hashimoto's/Hypothyrodism Land

My adventure with Hashimoto's Thyroiditis/Hypothyroidism began when I was 19 years old, though I suspect things had started to go downhill many years earlier. I went in for my annual OB/GYN check-up a couple weeks after getting married, during that 30-day period when I could still be on my parent's insurance. While I was there, I mentioned that I thought I was having negative side effects related to my birth control pill. My gynecologist thought the symptoms about which I was complaining sounded atypical for the type of birth control I was taking, so she sent me across the hall to get blood work (after giving me a prescription for a different pill, just in case). A week or so later, I received my lab work in the mail, accompanied by a letter from the gynecologist--while my thyroid stimulating hormone (TSH) was within the normal range at 3.45, one of my other thyroid hormone levels had come back significantly low. She instructed me to meet with my new primary care physician in order to get a referral to an endocrinologist.

I made the switch over to Tricare Prime Remote at that time, and chose one of the Primary Care Managers (PCM) in my area that was accepting new patients. I made an appointment, went in, and talked to the doctor about my extreme fatigue (I was finding it difficult to carry a bag of groceries from the store to the car), my inability to lose weight, low body temperature, hair loss, and abnormally cold extremities. He ordered a blood draw to test my TSH and I scheduled a follow-up. At my follow-up appointment, he told me my TSH was fine (despite the fact that I presented him with the abnormal test results from before), and that I just needed to exercise more--After all, according to him, he ran two miles every day, and that kept him healthy.

I was, of course, furious, but at that point, I felt like there was nothing I could do.

Fast forward about 2 years. My husband returned from his deployment from Iraq, was awarded his Green-to-Gold Scholarship, and enrolled in university full-time while working two jobs. I, too, was a full-time student at Georgia Tech, and so health insurance was something we went without for a few months. When we finally managed to pool the funds together and purchase health insurance, we went back to Kaiser Permanente, where I had been before. In an odd twist of deja-vu, when I went in for my annual with OB/GYN, I mentioned to the midwife who saw me that I thought I was having issues with the birth control I was on and that I wanted to change. She gave me another new prescription, and also had me do some blood work to test my TSH, again. That time, though, my TSH was the lowest it has ever been at 2.84 (or somewhere around there).

About a year later, I found myself, yet again, getting my thyroid hormones tested, this time by the dermatologist. I had begun working full-time for a university and was able to get amazing coverage with Kaiser through my employer. My husband insisted I make the appointment because my hair was falling out in fist-fulls. As I got ready for work every morning, I would sob as I did my hair, sure that I would soon have bald spots. The dermatologist asked if I had ever had my thyroid hormones checked (after doing a thorough examination of my hair follicles or some such craziness), and then sent me to get yet another blood draw. That one yielded a TSH of 4.45.

I thought that sounded a little high, and started doing some homework. I found that the American Association of Clinical Endocrinologists suggested that anyone with a TSH outside the range of 0.3-3.0 be treated for a thyroid problem. Mine was very obviously outside that range, but showed up as "normal" according to the laboratory. I read up on all of the research that suggested anyone with a TSH over a 2 should be carefully monitored for a thyroid problem, and that the majority of the population has a TSH that hovers right around 1. I discovered that the endocrine system is very sensitive, and what may be a "good" TSH level for one person could make another feel exactly as I had been feeling for years. Unfortunately, none of the medical professionals I was seeing or had seen were willing and/or able to refer me to an endocrinologist, despite my pleas.

I got pregnant, and kind of lost sight of the whole thyroid thing. In fact, not once during my pregnancy did anyone ever test my thyroid hormones. My husband commissioned back into the Army, I had the baby, and we moved across the country to Washington state. I had gained a good 15 pounds before getting pregnant, and then at least 50 with the pregnancy. By the time we arrived in Washington, I was down 20 pounds from my pregnancy weight, and feeling pretty optimistic that I would be able to take it off...

And then it started to creep back up on me. We started an all-vegan diet to help boost weight loss, but I continued to gain. I started taking the baby out for a thirty minute walk each day (or 45 minutes on the exercise bike when it was raining), but it made no difference. So, I made an appointment to see the doctor and see what the deal was. I was back to having a lot of the same symptoms, but the weight gain, I admit, was the one that was most getting to me. I wanted to be back in my old clothes, dammit, and being stuck in a body that did not feel like mine was getting me down. The doctor I saw was not my assigned doctor, but he agreed to test my thyroid hormones, and this time they came back at 5.1 with a normal range of 0.5-5.5. I thought that was entirely too high for comfort and arranged for a follow-up appointment with my regular doctor, which took place in May 2011.

"My" doctor agreed the numbers were pretty high, and said we would try a small dose of thyroid medication, but first he wanted to get his own reading. That test came back at an indisputable high of 6.1 and I was promptly prescribed 50 mcg of Synthroid. I asked what my target TSH range would be, and was told we were going to try to get me down below 3.0. I was a little apprehensive about that 3.0 based on what I had been reading, but decided to see how things went, and go from there.

I not only began taking the Synthroid, but increased my exercise from the 30 minutes a day I had been doing to 60 minutes a day. Keep in mind, I was also breastfeeding at this time, so I was burning extra calories to produce milk, as well. However, the weight continued to pile on and I was officially back at the weight I had been when I left the hospital, baby in tow. I decided the vegan diet was not helping, so we slowly introduced small amounts of fish and dairy back into our diets; other meats were still a rarity, but did make it on the menu now and then. When I went back in for my next blood draw in late July 2011, it was to find that my levels were back in the "normal" range, but still well over 4.0 (4.25-ish maybe?). I called my doctor, discussed, and he increased my Synthroid prescription to 75 mcg.

And that's when I decided I had to lose the weight and would do whatever I had to in order to make that happen. My dad gifted both me and my husband with Fitbits, and I got to really exercising. By the time I went back in for my next blood draw and follow-up, I was walking/jogging 10-15 miles a day. 3 hours of every day but Sunday or Saturday (depending on my mood) were spent exercising. I was still just as tired I had ever been, but I powered through it, because, well, I was determined to get it to go away. I wrote down everything that I was eating; I tried eating more, I tried eating less. When I went in for my follow-up in September, I had lost 3 lbs; that 3 lbs was so easily lost and gained from one day to the next, it was most likely only water weight, anyway.

So, at that appointment, we discussed all of this--the fact that I was doing all of this work and nothing was happening; that I was always cold, that my sleep patterns were incredibly insane, that my hair was falling out in handfuls, again. He looked at my blood work and my TSH was a little lower than it had been, but my Free T3 and Free T4 had dropped. He scratched his head, wrote me a prescription for 1/2 grain of Armour Dessicated Thyroid in addition to the 75 mcg of Synthroid, and told me sometimes the little extra T3 in the Armour helps a lot of people feel better.

I was excited about this, and began the new regimen. Very little changed over that period, although the heart palpitations I had been experiencing changed--no longer were they once-in-awhile random occurrences, but an almost constant  thing. I wasn't sleeping well, at all, I felt worse than ever, and every time I looked at myself in a mirror, I cried. I was so depressed about myself, I had mornings when I just didn't ever want to get out of bed.

When my blood draw in late October came about, my TSH was low at 0.2, and my Free T3 and T4 were just into the normal range. My doctor had another head-scratching moment, and agreed to send me to an endocrinologist. I had a resurgence of hope and tried to make an appointment as soon as my referral (good for 60 days) went through.

My appointment was 58 days later. I called at least twice a week (sometimes everyday) for over a month, trying to get an earlier appointment, but there was nothing to be had. On December 29, I went in to meet with the endocrinologist. I was the heaviest I had ever been (thank you, Holidays) and felt just horrible about myself, but I was so optimistic that the endocrinologist would not only want to help, but would be able to, as well.

We discussed all of my symptoms, why I was there, all of the exercise and diet changes I had made over the past year; but I began to feel put off when I was told I was probably just being hypersensitive to the symptoms I had been experiencing for the past 6-and-a-half years. But, he did make a big deal about the fact that the endocrine system is very sensitive; that the normal for one person might be completely different for another. This was comforting, for it was the same thing my primary care physician had told me when we started the whole process. The endocrinologist explained that the low Free T4 results were most likely a result of my body converting the T4 to T3, which is often seen in patients who are prescribed Armour (I was unsure how that related to the fact that the low T4 was found when I was only on the Synthroid, but that was something I didn't realize until later, and I was never given the chance to ask). He changed my medications around, and I was prescribed 1 grain of Armour (no Armour/Synthroid cocktail) with no refills. As I was leaving, I asked when I should schedule a follow-up, but was told I should get my blood drawn in 8 weeks, and it would be decided then whether or not I would be given a follow-up.

That last bit really gave me pause, especially after I had time to think about it. Here was a doctor that had told me it was common knowledge that numbers don't necessarily correlate with how one feels, yet he only wanted to go off of my numbers--that those numbers would be the determining factor in whether treatment was continued. I found I could only hope that the medication change was what I needed or my numbers came back abnormal once again.

It was winter in Washington, so I couldn't go walking, anymore--it was not only cold, but constantly raining. So, I started biking, instead. I managed to work myself up to at least 3 hours a day--I did 2-2.5 hours in the morning, then another half hour while E took her nap and at least 30 minutes after dinner. That resulted in about 5-10 pounds lost, depending on the day/water weight.

Fast forward to February. I called into Endocrinology and asked to have my blood draw ordered. I was leaving town in a little over a week, so I went in exactly 56 days later to ensure I would have enough time to get prescribed more medication, whatever it was. I was told that one of the nurses would call me with instructions in a few days with the results and instructions, but when I heard nothing the Friday before I left, I called them. I talked with a nurse, who told me they had received my results, but the doctor had not looked at them. She told me she would call me back that afternoon. I specifically asked when I should call back if I did not hear anything, and she told me Monday morning (I also explained that I was leaving town and needed more medication). Not surprisingly, there was no call and I started to stress out--I only had enough medication to get to Monday, and then I was out. So, I called first thing Monday morning, explained that I had taken my very last pill, and that I was leaving town. I was told he still had not checked my results, but she would find him and get back to me ASAP. I still heard nothing. Tuesday morning, I was incredibly stressed. E and I were getting on a plane early the next morning, and I still had no medication. I called, talked with the nurse, explained the whole situation, again, and she told me she would call me back--the doctor was in a meeting. I asked when they left for the day--4 o'clock. I waited until 1:30, and then tried calling her. No answer. I called again in another 10 minutes. Lots of rings and a voicemail. I kept calling, and was never able to get anyone, so I woke my small child up from her nap and drove her through the snow to get to the hospital and see if they could help me in person. The ladies at the front desk were very understanding--they told me they doctor had gone upstairs to the diabetes clinic and would probably be back down at 3:30. They asked me to have a seat and told me they would page him if he still wasn't down by 4:00.... Which, of course, if what happened. They paged him a few times, and he finally called down to tell them I was fine, I was being released from his care, and that he had put in for a new prescription. I would have cried then and there, but I had to go wait an hour for my number to be called in the pharmacy.

When I got back, E and I made a little trip to patient advocacy. I explained why I felt like I had not been listed to, and asked if there was anything I could do. The very nice lady I spoke to said that in cases like these, they would put in a request with my primary care physician to issue a referral for an off-post second opinion. I followed-up with my doctor, received a referral, and made an appointment off-post with a civilian doctor (Did I mention this was all after I was seen in the ER experiencing symptoms I had complained about and told I was just being "hypersensitive?").

However, I will say Armour Thyroid has been what I was looking for. I do feel much better than I was, I have been able to lose about 23lbs (though, it's stuck and I can't seem to lose any more... Which is another story, altogether).... I haven't had a day where I would rather not face the world, and I feel like I am a happier person more of the time. But I don't think we are quite there, yet. I am still tired, I still get the heart palpitations, my feet are still good substitutes for ice cubes, and my hair is coming out. I really think all I need is a slight adjustment in medication, but I was never given the chance to communicate that. The weirdest part of all that? The weight started to come off when I finally gave up exercise. When the doctor told me I was "fine" and was being released, I decided to give up. There was no point in killing myself every day, only to see no results. The moment I did that, the weight started to come off... There's something wrong, there.

I finally met with the second endocrinologist at the end of May 2012. It was essentially a repeat of the above, (to include a lot of phone calls that were never returned), except, this time, I asked whether an iodine supplement would be something that would be something to consider (the field seems to be split on that one).... I think he was confused, because when I finally talked to someone, I was told radioactive iodine therapy was not something with which they treat hypothyroidism patients (...). However, this doctor told me he wanted my TSH to be right at 1 and suggested changing my medication to Synthroid and hiking it up to 125 mcg. I told him I felt better on the Armour that I ever had on the Synthroid. He said that was fine, but he wasn't going to change my Armour dosage--he only wanted to work with me if I changed over to Synthroid.

And so, that's where I currently stand. In a few weeks, I will go in to see my primary care doctor, and see where we go from here. I am determined to feel better, keep my hair, and lose the weight.

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