As I discussed in my “cookie cutter” medicine video…

… I’ve been frustrated by my persistent hypothyroid symptoms over the past few months. I experienced serious carpal tunnel pain every time I tried to work on the computer. The skin on my hands was like sandpaper. My menstrual cycle was too long by weeks. I felt lethargic and sleepy all day, even after a full night of sleep.

Alas, my doctor declined to increase my dose of desiccated thyroid beyond two grains, given that my TSH was too low on that dose. Hence, I decided to see Dr. Juetersonke of Colorado Springs, because his approach is to treat based on the full range of labs (i.e. not just TSH, but Free T3 and Free T4) plus symptoms.

Happily, he increased my dose of dessicated thyroid to three grains. The difference has been phenomenal. My carpal tunnel pain is negligible. Yay! The skin on my hands is soft and supple — for the first time in years. Yay! The length of my menstrual cycle is basically normal. Yay! I’ve not gained any more weight, and I’ve been able to lose a few of the 30 pounds I’ve gained due to hypothyroidism. Yay!

To my surprise, my lethargy remained basically the same, however. After the busy fun of ATLOSCon at the end of May, I had that “just-got-back-from-vacation” exhaustion not just for a day, as is normal for me, but for two full weeks. It was miserable! A saliva cortisol test showed seriously low levels of cortisol, but a follow-up blood test showed normal levels, so Dr. Juetersonke didn’t recommend doing anything.

By mid-June, I felt that I had to try some kind of adrenal supplement, so I ordered Natural Sources: Raw Adrenal. Much to my amazement, that very day I noticed a substantial uptick in my energy levels — and even better, my sex drive returned with a vengeance. YAY!

So clearly, adrenal insufficiency has been part of the picture, probably for a long time. I’m too prone to stuffing myself into a pressure cooker with work and other projects… and that just has to stop. It’s not so much that I need to work less, I think, but rather that I need to be okay with all the stuff that I’m not able to do in a given day. Also, I’ve found that activities away from home and/or with people exhaust me quickly, so I’m trying to limit those as much as possible.

Notably, unlike with the desiccated thyroid, I expect to be able to wean myself off the adrenal supplement in a few weeks. Also, I don’t think that I would have seriously pursued the adrenal angle if I’d not done the saliva cortisol test (and some others) with Modern Paleo’s own Christian Wernstedt of Vital Objectives. Our discussion in light of the test results was very enlightening and thorough — far more so than with any doctor that I’ve ever had.

Also, I had blood drawn for a new set of thyroid labs a few days ago. I’m not sure whether my doctor will want to raise me to 3.5 grains or not. I still have a slight touch of symptoms, so I think that I’d like to try that small increase. But if my Free T3 and Free T4 look good, I’ll be pretty happy to stay where I am.

Overall, after nearly two years of battling my hypothyroidism, I can’t express just how happy I am to be doing pretty darn well… finally. It has been a rocky road, mostly thanks to a medical establishment that ignores everything except TSH and prescribes only Synthroid. My every step toward health has been an uphill battle for me. I’ve had to reject the standard analyses and protocols in favor of treatments that most doctors would regard as quackery, namely desiccated thyroid, high dose iodine, and now adrenal supplements. It’s getting ridiculous!

As a result of my experiences, when I hear people say that we should leave medicine to the experts, I feel like a small nuclear bomb explodes in my chest. If I’d done that, I would still be disabled by impenetrable brain fog, lethargy, and pain. Many, many people are suffering in that state today, not knowing of the alternatives. Hopefully, they can learn something from my experiences.

On October 19th, I had another round of thyroid labs. At the time, I was on 1.25 grains of dessicated thyroid. And I was enjoying (!) various hypothyroid symptoms, most notably terribly dry skin and severe carpal tunnel pain. Due to the latter almost any time spent on the computer was very painful for many weeks. (That wasn’t all bad, however, as that gave me the excuse I needed to buy my new horse Lila.)

The results of these new labs were as follows:

• TSH = 1.75 (normal range .3 to 3.0)
• Free T3 = 2.7 (normal range 2.0 to 4.4)
• Free T4 = .97 (normal range .82 to 1.77)

Although within the normal range, those Free T3 and Free T4 numbers are still lower than they ought to be. So, realizing that 1.5 grains was not too much, as we’d previously thought, my doctor was willing to increase my desiccated thyroid dose to 1.75 grains for six weeks, then to 2.0 grains if my symptoms persisted. (I just increased to 2.0 last week, since my carpal tunnel pain returned, albeit not quite so strongly.)

The difficulty for me — as you can see from my prior lab values — is that my TSH will read as normal, even though my Free T3 and Free T4 are low and even though I’m experiencing unmistakable hypothyroid symptoms.

Most doctors use the TSH as the gold standard in diagnosing and treating hypothyroidism. Some ignore the patient’s symptoms. Some refuse to test anything other than TSH. Happily, my doctor is willing to work with me, provided that we manage the risks of too great a dose of thyroid medication, particularly increased heart rate and palpitations and osteoporosis. To monitor the latter, she ordered a bone density scan to use as a baseline. Mine was normal, with a z-score of -0.9 for lumbar spine, 1.3 for femoral neck, 1.1 for total hip. Also, we re-scanned my thyroid on ultrasound at the same time, and the single-nodule goiter had shrunk quite a bit.

The most interesting — but distressing — news was my thyroid antibodies. Due to a simple oversight, I’d never had those tested before. Here are the results:

• TPO Ab = 11 (normal range 0 to 34)
• Antuthyroglobulin Ab = 68 (normal range 0 to 40)

Here’s how Janie Bowthorpe of Stop the Thyroid Madness explains these tests:

Hashi’s is confirmed by two antibodies labs: anti-TPO and TgAb. The first antibody, anti-TPO, attacks an enzyme normally found in your thyroid gland, called the Thyroid Peroxidase, which is important in the production of thyroid hormones. The second antibody, TgAb, attacks the key protein in the thyroid gland, the thyroglobulin, which is essential in the production of the T4 and T3 thyroid hormones.

In essence, my hypothyroidism has some auto-immune component, although it’s not clear to me just how bad those number are.

For some people, gluten seems to be a major contributor to auto-immune thyroid disease, such that thyroid antibodies disappear on a gluten-free diet. I’ve not eaten gluten (except unknowingly and/or accidentally) over the past year, but I do wonder whether dairy consumption might be an issue. So at some point, I’ll want to do another dairy-free experiment, then test my thyroid antibodies again. I’m not sure what else I can do to preserve my thyroid over the long term. Mostly, I need to do a whole lot of reading on Hashimoto’s.

Finally… I was first diagnosed as hypothyroid on November 6th, 2009. It’s rather depressing that I’m still struggling to understand the nature of my problem and to find the right dose of my desiccated thyroid. It’s depressing that I’m 20 pounds heavier than I was a year and a half ago. Every ounce of that weight gain was due to thyroid insufficiency, in that it happened before I began taking desiccated thyroid and then when I’ve been on less than 1.5 grains. I hope that I can lose some of that, now that I’m on a decent — even if likely still not adequate — dose of dessicated thyroid.

Mostly though, I’m hugely grateful that I’m no longer in the very sorry state that I was last winter. I’ve got a working brain and tolerable energy again, and that’s huge. All the rest is gravy.

On August 24th, I had another round of thyroid labs. Here’s the letter that I wrote my doctor about my status:

Here’s another update on how I’m doing with respect to my hypothyroidism. As you recommended, I reduced my total thyroid medication by omitting .5 to 1 grains per week from my baseline of 1.5 grains per day. That didn’t work out so well, and let me explain how.

Starting on May 12th, I took just 1 grain on Saturdays, but 1.5 grains every other day. In that very same week, I increased the intensity of my workouts substantially by starting CrossFit once or twice per week. (That’s definitely ramped up my metabolism, as I was eating about 30% more each day, but my weight remained the same.) I felt great for a few weeks, but then slipped back into feeling a bit more lethargic and experiencing some more dry skin. I didn’t worry about it too much, however, as I was also under lots of stress (and not working out much) because I was preparing a series of lectures for a conference in early July.

After returning from the conference, I decided to try omitting another .5 grains per week starting the week of July 12th. Actually, for ease of managing my medications, I would take 1.5 grains for two days, then 1 grain for one day. So I was omitting a bit more than 1 grain per week on average. That was a small disaster: various hypothyroid symptoms returned, and I felt like my body didn’t know which way was up, I suppose due to the variation in T3 each day.

I stopped that variable dosing on July 25th. But instead of returning to 1.5 grains per day, I began taking just 1 grain per day. That seemed worth trying, given that I felt slightly better when I reduced down slightly from 1.5 grains per day. For the first few weeks, I felt fantastic again, but now I’m slightly lethargic and my skin is too dry again. Most tellingly, I’ve been gaining a pound of weight per week again, and I’ve experienced a return of some other GI problems that I had when seriously hypothyroid, e.g. diarrhea if I skip a meal. As for the weight gain, I know that I’ve gained some muscle due to CrossFit, but I’m clearly gaining fat too.

So… Yikes! These past three months have been a series of failed (albeit informative) experiments for me. I’m curious as to what the labs will say now, but I suspect that I need to be bumped up slightly, perhaps to 1.25 grains per day. (For now, I’d rather try doing that than adding T4, although I’d be amenable to trying that option next time, if I’m still not quite right.)

So what were my labs? Odd, yet again:

• TSH = 1.650 (okay, was .115 in May)
• Free T3 = 2.3 (normal range 2.0 to 4.4, was 2.8 in May)
• Free T4 = .78 (normal range .82 to 1.77, was 1.14 in May)

So my TSH is back to normal, but my Free T3 is lower and my Free T4 has plummeted off the charts. Grrrr.

(I’m so glad that my doctor isn’t one of those who only tests TSH. If she was, I’d seem totally normal!)

After consulting with my doctor, I began taking 1.25 grains of desiccated thyroid on August 26th, but that hasn’t done much for my hypothyroid symptoms. The skin on my hands is terribly dry, my carpal tunnel pain has returned, my menstrual cycle has gone wonky, and I’m stalled on my strength gains. I’ve stopped gaining weight, but that might be due to cutting out dairy and nuts around the same time. I’ve only been on the 1.25 grains for just over two weeks, so I hope to see more improvement with time.

You know what I’m learning here? Hypothyroidism is a hell of a bitch to manage. Even though I’m so so so much better than I was this past winter, I want to be right… and that sweet spot seems tough to find.

As I reported some weeks ago, my thyroid labs in early May showed that my TSH dropped below normal, suggesting that I was a bit over-medicated. So my doctor asked me to shave a bit off my desiccated thyroid by reducing my daily dose from 1.5 grains to 1 grain once or twice per week. As I said in that post, “[My doctor] thinks that might help with my lingering symptoms, given that the symptoms of mild hypothyroidism are often the same as the symptoms of mild hyperthyroidism. (Nice, eh?)”

To my surprise, that strategy seemed to work. Starting in late May, my skin wasn’t so dry, my basal temperature stayed above 97, I never felt unbearably cold, and my mind seemed sharp, and my energy levels increased. However, I’m not sure if that was due to the slight reduction in desiccated thyroid or not. I began CrossFit in the same week as that change in medication, and that clearly kick-started my metabolism.

Then, for most of June, my life was far more stressful than usual. I had two very hard deadlines: the podcast on finding good romantic prospects and then my OCON course on luck. On top of that, the debate about the NYC Mosque was personally stressful for me. After that, OCON disrupted my usual quiet routine, required me to teach every morning at 9 am, and cut down my sleep to merely tolerable levels. Of course, OCON was a blast, but such blasts are stressful for mind and body.

Unsurprisingly, some of my hypothyroid symptoms have returned over the past few weeks, particularly just after OCON. After I returned home on Sunday, the skin on my hands, particularly around my nails on my hands and feet, dried up and split open. It looked like the early stages of some nasty disease. (Ick!) After my first CrossFit workout in weeks on Tuesday, then skipping the second half grain of desiccated thyroid on Wednesday, that skin returned to normal, even though I did nothing for it. In addition, I experienced serious memory problems early in the week: I couldn’t retrieve proper names, including of people and places that I’ve known and used regularly for years. I noticed similar problems in the stressful weeks before OCON, although far more mild. That problem has faded to a minor nuisance, thankfully. I’ve not had as much energy as I’d like, and I’ve had some minor problems sleeping too.

In short, my body is acting strangely. The stress of the past few weeks has likely had some impact, not just on my production of thyroid hormones, but also on cortisol production too. I’m curious as to the overall impact of the CrossFit workouts, as well as the reduction in my dose of thyroid medication. I wonder about the long-term effects of my high-dose iodine supplementation. All that might be difficult to sort out, unfortunately.

I don’t want to give the wrong impression: I’m doing very well, overall. Yet I’m trying to be very sensitive to changes in how I’m feeling: I want to see the patterns, as that might enable me to adjust my dose of desiccated thyroid downward even further. I would love that, and I’ll definitely talk to my doctor about it when I see her in October. I’ll have another thyroid panel in early August too, so I’ll be curious to see what’s happened with my TSH.

Of course, I’ll report back about what I find!