Let's Talk About Thyroid -- My Personal Story (Pt. 3/3...for now)

The first post in this 3-part series explored thyroid function in general, including what the different thyroid-related hormones are, the signs & symptoms of hypo- and hyperthyroidism, and what should be included when you have your thyroid hormones measured. (Reminder: TSH and T4 are not enough!) In part 2, we looked at the potential effects of low carb diets on thyroid function. As promised, here in part 3, we’ll do a deep-dive into my own personal experience with hypothyroidism. 

We’ll get into the gory details soon. But as Sam Beckett said in the final episode of one of the greatest TV shows of all time, Quantum Leap, “Instead of ‘once upon a time,’ let’s start with the happy ending.’” I started thyroid medication in January 2017 and here’s what’s happened since then: I’ve lost 17 pounds. My chronic constipation is gone. My hair no longer falls out in alarming clumps daily. My severe, longstanding, and unremitting depression is 89% gone.

This medication has been nothing short of life-changing for me. I still have a ways to go in several respects, but let’s just say that the reason I’m writing about thyroid at all is because, having gone through this experience, it is now almost like a religious mission to me to provide whatever information and help I can to people who are currently, right this minute, feeling as awful as I felt until recently. And I kind of hate saying that. I am as far from a religious (and low carb) zealot as a person can be. And yet, I now feel a compulsion to educate people so they can help themselves. As passionate as I am about the myriad benefits of low carb, and as much as I sometimes want to grab people at the grocery store and talk some sense into them, that is now far eclipsed by my fervor for proper thyroid assessment and treatment.

There’s so much to cover, I don’t know where to start. If you come to my blog for sensible information on low carb and ketogenic diets and don’t give two hoots (or even one hoot) about my thyroid odyssey, skip the rest of this post and wait until next time, when I’ll be back to posting my usual fare. On the other hand, if you suspect you have a thyroid problem, or you know you do and your medication is not getting you where you want to be, this is for you, my dears. You’re not alone.

WHY Hypothyroid?

I’ll start with the obvious, I guess. Do I think a low carb diet led to my thyroid problems? Unlikely. I was never at a severe, long term caloric deficit. I exercise regularly, but nothing that would be considered excessive – not even close. (In fact, if anything, my thyroid trouble got worse as did less exercise.) Plus, my diet hasn’t been ultra low carb in many years, as I do have dietary excursions now and then that may or may not involve ice cream, Nutella, and other such edible sins. Even so, I pop in and out of ketosis here and there, but over the last few years I have not intentionally maintained a steady state of super-strict-ultra-uber-deep ketosis for more than a few weeks at a time. (I am, however, fat-adapted.) So I cannot at all put myself in the category of people I mentioned last time, for whom a very low carb diet might contribute to low thyroid: chronically undereating, over-exercising, and very stressed out. None of those applied to me.

I don’t know why my thyroid is wonky, although as time has gone and on and I’ve learned ever more about this all, I have my suspicions. I do know that, short of a whole-house filter that would remove fluoride from my drinking and shower water, I tried just about everything to get things going right. I assure you, medication was a last resort. Knowing what I know now, I wish I had gone for it right off the bat, but that’s not my style. I didn’t want to take medication. I still don’t. I want to figure out why my thyroid gland isn’t doing what it’s supposed to do on its own, and fix that. Ultimately, that’s still my goal. I would like to not have to take these meds for the rest of my life. If I have to, I will. As I said, they’ve been life-changing. But there’s a reason my thyroid isn’t working properly, and I still intend to find out what it is. 

The thing is, based on my lab tests, the problem isn’t with my thyroid gland at all. It’s my pituitary. I mentioned in part 1 that in many cases of hypothyroidism, TSH—produced by the pituitary gland—is high. (TSH is high, but T3 is low: TSH is knocking, but nobody’s home, so to speak.) In my case, TSH was low. So it’s no wonder my T4 and T3 were low: my pituitary wasn’t even giving my thyroid the signal to make hormones. (BTW: when my doctor saw my numbers, she gasped and said, “Amy! No wonder you feel so awful!” As I sat there practically in tears…)  The problem is, no one seems to know quite what the heck to do for a pituitary problem, so lest I go on feeling like absolute garbage for the rest of my life, I had to deal with the thyroid situation in the meantime. (Allow me to say, though, that I wonder what else my pituitary isn’t pumping out. Growth hormone? Is this why I never seem to gain muscle, even when I’m lifting? I mean, honestly, WTF? This is somewhat terrifying, but I’ll spare you the details and just stick with thyroid for now.)

As I said, medication was a last resort. I tried to help myself. I tried for a very long time. (Longer than I should have, in fact. Had I given up and gone for the meds sooner, I could have spared myself a lot of grief and about 15 pounds of fat gain.) With what I know about this stuff, I expected that I would be able to help myself, and I spent several years and thousands of dollars trying to do so.

Before I get into the 47 zillion things I tried in my quest to help myself, here are the hypothyroid signs & symptoms I experienced. (Bold means it was severe.)

• Depression*** (This one gets bolded and three asterisks, because it was beyond severe.)
• Hair loss
• Constipation
• High cholesterol (I can’t be sure whether this was due to hypothyroid or if I am perhaps a hyper-responder to saturated fat in my diet. Most likely just hypothyroid, as the highest I’ve seen my total cholesterol was 288 and the hyper-responders are often in the 300s or 400s and higher. Plus, several years ago, when I was eating plenty of saturated fat but didn’t have hypothyroid symptoms, my cholesterol usually ran 175-220 – not abnormal at all for a healthy woman.)
• Low resting heart rate
• Low blood pressure (Usually in the range of 90-something over 60-something, but it was once measured at 88/58 when I was about to donate blood. They turned me away that day, even though I felt fine. The lab tech assured me I would pass out if he took a pint of blood from me.)
• Frequently cold
• Weight gain
• Inability to lose weight (even with my habitual low carb diet and exercise)
• Edema/water retention – especially in the lower legs (my ankles looked like tree trunks, when I’d had very shapely legs for most of my life, before this all started)
• Fatigue (only toward the very end of my ordeal)

No one who knows me well would ever, ever describe me as happy-go-lucky, optimistic, or a free spirit with a positive outlook. I’ve always been a bit melancholy, quiet, and dark. I kind of enjoy it, actually. I’m fairly certain it makes me a better writer. So I’ve always been a gloomy kind of person, but the depression I experienced for the last 2-3 years was orders of magnitude worse than anything I’d ever experienced. As I mentioned in part 1, I knew all along that my depression wasn’t “all in my head,” and that thinking fake, phony positive thoughts was going to do fuck-all absolutely nothing to help me. Allow me to emphasize: if you are experiencing depression rooted in a measurable biochemical or physiological/hormonal imbalance, then no amount of talk therapy or time in a psychologist’s office is going to help you. You need to actually correct the underlying causative problem. (There are probably a couple million people taking antidepressants to no avail right now, because what they really need is thyroid hormone.)

I’d been dealing with these symptoms for years, and tried a number of things to help myself. I tried iodine. I tried selenium. I tried thyroid and pituitary glandulars. I had been rejected for blood donation due to low hemoglobin 3 or 4 times in the past couple of years before I serendipitously learned about the crucial role of iron in thyroid hormone synthesis while I was researching something unrelated. So I added iron. I did an organic acid test and tried things based on that. The list goes on. Bottom line: I tried many different protocols. I’ve been to professional seminars; I’ve read books. This wasn’t amateur hour. It’s not like I started out not knowing anything about any of this. And yet, nothing worked.

Actually, everything worked, but only temporarily. I hit upon a few different combinations of supplements, foods, and behaviors, all of which had an immediate and significant positive impact on my symptoms. Unfortunately, these improvements typically lasted for about three or four weeks. I suspect that even though they ultimately proved not to be what I needed, hitting my body hard with a new combination of nutrients and other interventions was enough of a shock to my system (in a good way) that it had to have some impact, even though it didn’t actually correct the underlying problem. Each time, I would feel noticeably better and hang my hope on having found THE THING. And about three weeks later, I was back to feeling as awful as ever.

I mentioned in part 1 that I would explain why I waited nearly seven years to go after medication. The truth is, I didn’t.

Steps and Missteps

After conceding that all the effort I’d put toward helping myself with food, supplements, and other changes had failed me, about two years ago I went to an MD to see about starting medication. (Actually, I didn’t see the MD; I saw the physician assistant, but she seemed knowledgeable and genuinely listened when I explained my history.) The PA started me on ½ grain of Nature-Throid®. (Nature-Throid® is dessicated pig thyroid and contains T4, T3, and naturally occurring co-factors. Your guess is as good as mine on how they standardize these powdered pig thyroids into precise doses of the hormones.) What the heck is a half grain, you ask? Good question. Thyroid medication is measured in wacky ways. Depending on the kind of medication, it’s measured in micrograms or “grains.” What, precisely, the hell? (It’s like women’s clothing. What the heck is a 6? Or a 14? Why can’t we use inch measurements, like they do with men’s clothing? Instead, we’ve got these useless numbers that tell us nothing. A size 12 in one store might be more like a 14 in another, or closer to a 10 in a third. Oh, the joys of womanhood. But I digress…)

I was so happy to finally have a bottle of thyroid medication in my hands that I never questioned what kind of dose a half grain was. In hindsight, this was a huge mistake. I had assumed that I was given this dose based on my labs. And maybe I was, but there was a lot—a lot—more to the story, which the PA never told me.

I took the medication for a month (the prescription being for 30 days’ worth) and felt no difference. No difference whatsoever. I was as depressed, constipated, chubby, and balding as ever. So I assumed the medication simply didn’t work for me. I should have gone back to the doctor/PA and asked for a higher dose, or a different kind of medication. Instead, I did what I counsel people against doing all the time: I just sat there, resigned to my fate.

Well, not really. I continued pumping money and time into researching and implementing other strategies, until I lost the will to keep this up. I stopped caring. And that’s when I developed a symptom I hadn’t had before: physical fatigue. Despite the hair loss, the constipation, the weight gain, edema, low heart rate, depression, and all the other stuff I’d experienced, the one big classic hallmark of hypothyroidism I didn’t have was fatigue. Until I did.   

And that’s when I got worried. I’m normally not a “bursting with energy” type of person, but I’ve always been able to get through the day, get my work done, go to the gym, hang out with friends, do my laundry, and whatever. But I got to a point where I needed to take a nap in the afternoon. I work from home, make my own schedule, and have no children, so being able to take a nap any time I please is a luxury I can indulge in. But I’d never had to before. This feeling of heaviness, of lethargy, was very odd for me. And when it began to interfere with my ability to make a living, that’s when I got serious about tackling this once and for all.

About a year and a half passed in between the time I tried the half-grain of Nature-Throid® and when the fatigue finally pushed me to do something about this again. My other symptoms had worsened during this interim period. All of them worsened, but the depression, hair loss, and weight gain became the most severe. (I didn’t start gaining weight until about 2 years ago, even though I was clearly dealing with hypothyroid long before that. I can only assume that following a low carb diet kept my weight in check. My guess is that had I been consuming a standard American diet, I probably would have gained much more weight, and gained it sooner.)

Thyroid Hormone to the Rescue!

Cue the triumphant orchestral music!

Picture it: Washington, DC, 2016. (Much less exciting than “Sicily, 1945…”)

Knowing that I could not live one more day feeling the way I was feeling, and armed with my test results in hand, I went to my trusty naturopath—someone I’ve worked with in the past, and who I very much like and respect. (She’s even referred some patients to me for nutrition. Sweet!) I also brought along a spreadsheet with my historical thyroid measurements, so we could look at the patterns and see that this was, in fact, a very longstanding issue that, over time, had become completely debilitating.

Enter the hormones!          

The dose of hormone I’m taking now is not relevant to anyone but me, but in an effort to help anyone out there who needs this information, I’ll tell you how we figured out how much I needed: My doctor started me on 50mcg of T4 (levothyroxine, generic for Synthroid®) and 5mcg of T3 (liothyronine, generic for Cytomel®). Her instructions were to stay with the 50mcg of T4 daily, and start with 5mcg of the T3. I was to take 5mcg of T3 daily for about 3-4 days, and if I didn't feel any better, increase it to 10mcg for 3 days or so, then 15mcg -- basically, increase the T3 dose by 5mcg every 3-4 days until I noticed I felt better. When I felt good, that was the dose I needed.

Armed with these instructions, a couple of weeks in, when I had increased the dose slightly but still wasn’t feeling any different, it finally—finally!—occurred to me to try and find out what the conversion was between equivalent doses of “grain” measurements of Nature-Throid® and micrograms of liothyronine. WELL! I discovered that the half grain of Nature-Throid® I’d been on was basically nothing. I might as well have swallowed air. A half grain is equivalent to 19mcg of T4 and 4.5mcg of T3. 4.5mcg – when my ND started me out at 5mcg as the teeny, tiny starter dose, knowing I would likely need more. (And I did – much more.) 4.5mcg – are you f*cking kidding me?! I’m on over ten times as much as that now. NO WONDER I felt nothing on that stupid half-grain. (See note at the end of this post for an update on my current dosing.) I should have gone back to the PA. I should have explained that I’d taken the meds for an entire month and felt no different. (And with the way thyroid hormone works, it isn’t something that would have taken weeks or months to exert an effect, assuming it was going to exert an effect. It should have happened within days.)  I just didn’t know any better. If my doctor/PA had instructed me on incremental dosing the first time around, I could have spared myself three more years of increasing weight gain, constipation, hair loss, and crippling depression!

At this point, allow me to tell you that as bad as the testing is for thyroid function, the treatment might be even worse. Many hypothyroid patients are given Synthroid®, which is T4-only. I cannot tell you how angry this makes me. As I mentioned in part 1, I’ve had numerous clients come to me “on thyroid medication,” yet they still feel awful. 99% of the time, they are taking Synthroid®. Again, far too many doctors are clueless when it comes to treating thyroid dysfunction. They assume that if they give you T4, your body will magically convert it into exactly the amount of T3 you need and all will be dandy. Take a big fat guess as to how often this is the case. For whatever reason, some people’s bodies don’t make this conversion all that well. (If they did, these women wouldn’t come to me still depressed, still overweight, still fatigued, still cold…) For some people, T4 is not enough. You must, must, also be on T3. Remember, T3 is the more potent and bioactive form of thyroid hormone. Navigating the choppy waters of thyroid treatment is so fraught with sh*tty doctors that your best bet is to do your own research, and I wholeheartedly recommend Stop the Thyroid Madness – both the website and the book, which has the wonderful title: Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment.

The Good, the Bad, and the Ugly

So what dose of T3 did I arrive at? How many micrograms were required to bring me back to life? Again, dosing needs to be individualized, so the amount I’m taking is not relevant to anyone but me. That said, I’m on the highest dose my doctor has ever prescribed for anyone. (And if you do the math from when I said I’m on over ten times as much as 4.5mcg, then you know I’m on at least 45mcg, and I’ll let you in on a little secret: it’s actually a little higher than that. [Again, note on this at the end.]) I’m still on just 50mcg of T4, but I’m on a very high dose of T3. My doctor is actually a little nervous about it, but I assured her that I feel like life is worth living for the first time in years. There’s still room for improvement, and I’ll get to the details on that in a minute, but overall, I am much, much better.

So that’s the good news. Is there any bad news? Has there been anything negative about the medication? Indeed, my friends, there has.

I had been on my ultra-high dose of T3 for several weeks and felt great. But then I started noticing some signs of being a little too high, which my doctor had cautioned me to watch out for. The most disturbing of these symptoms was a hand tremor. I also had muscle weakness. (During the worst of my depression, I slacked a great deal on weightlifting. When I finally got myself back in the gym, my grip was giving out sooner than the muscle group I was actually trying to work. [For example, with a deadlift or a bicep curl, my hands became exhausted before the larger muscle group, and I would have to drop the weight. I knew I had lost muscle strength because of not having lifted for several months, but the grip thing was very strange for me.]) Also, I became klutzy and clumsy. I’m usually very coordinated and never trip or drop things, but I started dropping things like crazy. I spilled my coffee. (Egads!) Other signs of being on too high a dose included skipping a period, and having a fast heart rate. I didn’t notice the heart rate during the day, but it was hard not to notice it when I was lying in bed trying to fall asleep.) I lost weight, of course, (about 17 pounds, with zero change to my diet and exercise, by the way) and I was finally pooping regularly, but these seemed like positive outcomes, as opposed to the hand tremor and muscle weakness.

I was feeling great, but there were obviously some weird things going on, and I couldn’t deny that I was probably on too high a dose of T3. I’ve decreased my dose a little bit and those weird things are gone. I suspect I needed to be on a kind of “therapeutic” dose for a little while in order to correct the longstanding deficiency, but then I had to come down to a lower “maintenance” dose more suitable for the long term. Unfortunately, I am starting to feel some of my old symptoms come back a little, so it seems to be a very precarious balancing act between continuing to get the wonderful, life-altering benefits of this medication, but not experiencing the detrimental effects of going too high.

Additional Lessons

Aside from everything I’ve learned about thyroid treatment, specifically, have I learned anything else? Anything that is of personal value to me, or professional value in my practice?

You bet your sweet bippy I have.

I have come to realize that we have a lot less control over our weight than we think we do. I’ve written about this before—particularly the role of the hypothalamus, pituitary, and thyroid in establishing the metabolic rate. This cannot be emphasized enough: some people have fast metabolisms, and some of us have freakishly slow ones. If you don’t believe this, then you have never met anyone with a serious thyroid or pituitary problem who eats well, exercises like crazy, and still cannot lose any damn weight. We all know people who eat a ton of garbage, never exercise, yet are thin and bursting with energy. And we know people who fit the opposite description. Now you know why. You cannot diet and exercise your way out of a hormonal imbalance that has far more control over your metabolic rate than anything you can do with conscious effort.

Please note that this is not free license to eat crap all the time and move your body as little as possible. What it is, is an explanation for all the people out there currently dealing with similar hypothyroidism/hypopituitarism as I am, or some other hormonal issue that is in the driver’s seat of their body weight, energy level, and moods. It is not your fault. You don’t need to “keto harder.” You don’t need to fast. You don’t need to do high intensity interval training. You need help with your hormones! Maybe you are iodine deficient, anemic, or low on selenium. If so, these things are very easily remedied. But if you’ve tried everything you can think of and you still feel awful, then FIND A GOOD DOCTOR AND GET ON THE RIGHT MEDICATION.

(But if your diet is crap and you never move your body, then yes, you might give some thought to making some changes there. I’m not saying diet and exercise have no influences on our health and physique. I’m saying only that if you have a big honkin’ endocrine imbalance, it might be impeding the effects your diet and exercise might otherwise impart.)

What else is going on?

I am now more convinced than ever that I need to find a way to address the pituitary side of things, because seriously, the thyroid gland isn’t the only thing the pituitary affects. I have a strong suspicion that the reason my body shape pretty much never changes, no matter how much I lift, is because my growth hormone levels are probably off, and maybe they have been for as long as I’ve had hypothyroid symptoms. This makes me somewhat furious, as I feel like the hours…the days…the years I’ve spent in the gym have basically been for nothing. (Not nothing, I know. I’m healthy and I’m fit, but what I am not, and have never been, is lean and muscular. I am tired of looking at people with beautiful physiques and feeling “less than,” even though I eat well and lift weights. I’m tired of feeling like there’s something wrong with me and that I somehow don’t “deserve” to look a certain way, or to feel a certain way in my own skin. I’m tired of not looking like I know a damn thing about nutrition.)

What about the constipation?

This went away pretty quickly after arriving at my proper dose of medication. As I wrote about way back in the poop post, if you’ve never experienced severe and longstanding chronic constipation, you cannot appreciate what a blessing it is to have regular bowel movements. And not just regular BMs, but regular BMs without resorting to high-dose magnesium citrate and vitamin C powders, potassium supplementation, or over-the-counter laxatives. Damn, it feels good to just GO.

What about the depression?

In the midst of all else I’ve experienced with this pituitary/thyroid mess, obviously the depression was the worst. So how’s that going now? Like I said, it’s about 89% gone. I’ll always be mostly a pessimist and a gloomy-gus. I am me, after all, and even thyroid meds can’t rewire my fundamental programming. This medication won’t turn me into someone else, but in terms of general outlook on life and mental and emotional energy, things now are like night and day compared to where I was this time last year. A good friend once asked if I thought my depression was situational or biochemical. I said it was 85% biochemical and 15% situational. Now, I would reverse that. Now, the biochemical “stuff” has been mostly cleared up, and what’s remaining is for me to take action to improve my personal and professional lives. So the truth is, I am still a tiny bit depressed, but that has less to do with a physiological imbalance and more to do with why anyone might be depressed, such as issues with one’s career, living situation, love life, etc.

So that was way more than anyone ever wanted to know about my pituitary and thyroid issues, but there you have it. I do hope this helps someone. If I had known about the incremental dosing of thyroid hormone, perhaps I could have saved myself the very worst of the experience. And had I understood earlier that this was a pituitary problem, rather than one specific to the thyroid, I would have known that iodine, selenium, iron, and whatever else was mostly a waste of my time and money. But having gone through it, I can be grateful that I might be able to help someone else.

P.S. I wrote this post a few months ago, and—surprise, surprise—things have changed in that time. I’ve significantly altered the type and dose of medication I’m taking. Thank goodness, the depression and constipation remained resolved. My physical and emotional energy remain high, but my hair is falling out again, big time. My weight has fluctuated a bit, some of which is likely thyroid related, and some of which is just the consequences catching up with me for…well, having eaten a lot of garbage during the past few months that I should not have eaten. (Oh, you thought this was the blog of some sort of low carb saint who never, ever lets things get the better of her and eats things and quantities she’s ashamed of? Sorry. Wrong blog.) 

Aaaaaanyway, bottom line: around July, I started feeling kind of bad, with several of my symptoms returning. I was understandably terrified, petrified worried that this medication was no longer working for me. If my body was building up a tolerance, or the meds were no longer effective for some other reason, I was pretty much at the end of my rope. I had no idea what I was going to do if that were the case. I absolutely, positively could not go back to how I felt before the medication. Fortunately, I stumbled upon this beautiful gem of an article about being over-medicated on thyroid medicine, and it seemed to describe my situation: I was on a very high dose of medication, and “paradoxically,” instead of experiencing signs & symptoms of hyper thyroid, I was back to feeling signs & symptoms of hypo. 

SO: I’ve been messing around with my doses for the past few weeks. I've made some pretty substantial changes and I'm feeling undeniably better on all counts. All counts, except hair loss. I’m still losing an alarming amount of hair daily, but everything else—the depression, constipation, edema, lethargy, fatigue—is gone. So, for now, I’ll take what I can get. And if anyone has actually made it this far and you’re interested in the meds/dose I’m on now, feel free to email me privately, or maybe I can write a part 4 to this series – just a short addendum with an update on this crazy saga as of November 2017.

Disclaimer: Amy Berger, MS, CNS, NTP, is not a physician and Tuit Nutrition, LLC, is not a medical practice. The information contained on this site is not intended to diagnose, treat, cure, or prevent any medical condition and is not to be used as a substitute for the care and guidance of a physician. Links in this post and all others may direct you to amazon.com, where I will receive a small amount of the purchase price of any items you buy through my affiliate links.