This is a bit of a mess, but I know you'll all find this all interesting (so get comfortable).
I'm a 30-year-old guy who was in great health, lifted weights 2-3 times a week, ran two other days per week, ate relatively well, and took his fish oil religiously. In late 2012 I got a comprehensive metabolic panel just for kicks; I have a family history of health problems (confounded by a family history of bad nutrition and lifestyle), and wanted to make sure there wasn't anything under the surface. I get the results back and everything (glucose, triglycerides, cholesterol, etc.) looks good, except a TSH of 4.9. The nurse practitioner asks if I had ever experienced fatigue; I could only respond by saying a fish doesn't really know it's wet, i.e., I've experienced some degree of fatigue all of my adult life, if not my childhood as well -- always problems with sleeping too much and not feeling refreshed, always problems with waking up, and likely had dysthymia (moderate depression) in college. So the doctor prescribes 50 mcg of levothyroxine (based on a single TSH reading of 4.9 and no testing of free T3 or free T4), which I start in late November 2012.
I really seemed to be feeling better, but looking back, there's a big chance that it was placebo. Things truck along until August 2013, when I have a relatively big stressor for a few weeks and my anxiety goes absolutely through the roof when I'm alone to think about things, and with it insomnia -- like, "I don't know if I slept for sure, but it looks like some time passed, so I guess I did" insomnia. So I go to a new doc, who says to get off the levo (he said he doesn't advise putting people on thyroid meds until their TSH is at least 10), and kicks me some Ambien for sleep. Here was the weird part: after two weeks or so of tapering off I felt this godawful, debilitating fatigue (tapering from 50 mcgs to 25 to 12.5 to 0), which lasted for two long months. The fatigue was especially bad after lunch until around 4pm, and got so bad that I had to reschedule a client mid-session (I'm a counselor), call my wife to pick me up and take me home, and was extremely close to going to the ER.
So the doc orders a lot of tests -- CBC, CMP, sedimentation, a few others. I remember the experience of reading these 20 or so tests and being amazed that everything snugly fit within the different ranges, except for my free T4, which was at the not-so-shocking level of 1.73 (cutoff 1.70), influenced by the exogenous thyroid hormone still running through my blood. At this time I was down to 25 mcgs of levothyroxine, and my doc said that the elevated FT4 was "likely causing a lot of your insomnia," and advises me to continue my taper. So I stay with the taper, things remain bad with the fatigue but somewhat manageable, and after two months or so I start feeling relatively normal. Meanwhile the doc starts talking of chronic fatigue, and writes a prescription for fluoxetine, which I didn't take at the time. Strange note about the fatigue: I was getting into meditation and Yoga at the time, and noticed that when I was feeling pretty stressed after work and felt the fatigue, it would greatly diminish when I did a quick set of stretches and mindful breathing.
So then I decide to send an anonymous death threat to my first doctor via email, which I accessed from my university in town to prevent IP detection. Actually, that didn't happen at all, and hopefully that's a rewarding jolt of adrenaline for being a diligent reader so far.
So. Things go well for a month: I'm sleeping a lot better, gave up the Ambien, but *still* feeling a bit of that strange fatigue lingering around, which I shrugged off at the time. In early January I remember the exact stressor that triggered my insomnia again (because I wrote about it for some strange reason): my wife started an internship and had to get up at 6:30am from now on, and I remembered feeling a bit of anxiety about falling asleep and having to wake up an hour earlier the following mornings. So the insomnia comes back, I put up with it for a week, go back to my doctor, get more Ambien, and I start waking up at 4am at the drop of a hat. I can't expressed how strange it was to wake up in darkness and scramble for my phone to find 4am plus or minus 5-10 minutes each and every time. I eventually get to a conference in February and the fatigue comes back with a vengeance, this time hitting me all day long
God, the fatigue was awful. It felt a bit like being lightheaded, at the worst times feeling like I would pass out (which I've never done before), almost like depersonalization -- as if my body was just mechanically functioning while I thinned out to the point of near nonexistence. Add to this terrible, uncontrollable anxiety, and I mean uncontrollable when I say it: cognitive restructuring, controlled breathing, progressive muscle relaxation, mindfulness, meditation, Yoga -- absolutely nothing would moderate this anxiety. The feeling of helplessness was probably the worst part. Actually, this might be the worst part: I had an uncontrollable focus on my heart when I would try to nap during the day, and just at the moment when I would drift off to sleep my body would snap awake, as if I were being surged with adrenaline.
I finally gave in and set up an appointment with my doctor to talk about getting on fluoxetine, especially since I was talking so much about anxiety, and it's a symptom of depression to have early morning awakenings. The fluoxetine was a big mistake. Everything got worse, and it didn't help at all that norfluoxetine (the active metabolite in fluoxetine) has a half life of eight freaking days. I got depressed to the point of serious suicidal thoughts. What really freaked me out (aside from the "shocking" feeling when trying to nap) was the memory and cognition problems. I began to forget everything, and reading became impossible, which killed me. I pushed through (God knows how), and even after getting seven hours of sleep a night for a week (with the help of Ambien CR), I didn't feel any better. My weight dropped from an already low 163 to 158. I remember going *back* to the same doctor (by now you should know how messed up my thinking was), and what does he do? Gives me another SSRI, Lexapro, and a 20 day supply of Klonopin, the latter I tried for a few days (for fear of dependence), the former I didn't try at all -- too much of a risk making my insomnia worse with another SSRI. Another weird note: the few times I tried Klonopin, I started feeling *less* fatigued, and was even able to stay up later than I planned on.
So my mom (who works at a hospital) tells me about a doctor that "all" of her patients recommended, and I set up an appointment, dragging my wife with me because I was unable at the time to carry a conversation competently. He runs (finally!) extensive testing of my thyroid, as well as other stuff my previous doctor didn't run a few months before, including ferritin, B12, and (aha) total testosterone.
We really had our hopes on the thyroid being out of whack, given how the symptoms lined up so well with hypothyroidism. But no, my thyroid results had to come back perfectly in range. But! My total testosterone came back at 158, with bottom of the barrel (but still barely within range) readings for LH and FSH (I had an MRI and there were no pituitary problems). All I heard was "low", but only later did I realize after reading a study that something like 250 makes you within the 1st percentile for a sample from all ages! Summarizing my symptoms: brain fog, memory problems, dead libido, intense fatigue, intense insomnia, anxiety, depression, a few other things I'm forgetting (see brain fog, memory problems).
Doc puts me on testosterone cypionate, 200 mg every two weeks, and 75 mg of Wellbutrin two times a day (which is actually a pretty small dose). Tomorrow will be my third shot, and so far there's clearly a change, but there's a long way to go. The fatigue has a much smaller window and feels lighter overall, I'm sleeping less terribly, anxiety and depression are a fifth of what they were, I'm able to carry a conversation pretty well, can read, am able to take daytime naps (no "shocked awake" feeling), have a functioning libido, more energy and interest in pleasurable activities. My weight is up to around 173, and I'm able to lift as much and even a little more than I could before with a few noticeable changes. The only bad news is that I'm on the verge with my family medical leave time, and I like my job very much. The good news is I finally have something to hang my hat on, and hopefully something that explains my fatigue when I was younger as well. I really don't give a shit what happens externally anymore, and just want to keep getting better.
Anyways. There were a few tests that none of my doctors took: estradiol, cortisol, prolactin, SHBG. My newest doc (who I like very much) was reluctant to run estradiol because, to him, my light weight meant it was likely fine. Whatever, he's a primary, I'll take what I can get, and I know I can squeeze at least an estradiol test out of him if my blood tests for free and total testosterone and a CMP come back awry.
That's all. Feel free to ask or state anything. It's good just getting this off my chest. This site has been a godsend in terms of information and support. One question: any thoughts on the tapering off levothyroxine bit with extreme fatigue? Could that have been related to (undiagnosed) low testosterone at the time, and/or some sort of hormonal reaction in coming off levothyroxine?