Looking Back at Two Years of Health

Posted: January 7th, 2010 | Author: Hellchick | Filed under: Health | 1 Comment »

Just about two and a half years ago I wrote a blog post about the ongoing health issues I’d been experiencing to that point and all of my run-ins — mostly bad, some good — with the medical establishment to try and solve them. That post is far and away the most linked, commented, and viewed post on my site, and I thought it was time for another update, two and a half years later. The story has developed more and I want to chronicle this for myself as well as other people.

I was frank in the previous blog post I mentioned above and I’ll be just as frank here, talking specifically about what’s going on with my body in all its gory detail, because the frankness of my last blog post seemed to really be helpful to readers, and there’s no sense in hiding this kind of information when you’re trying to write honestly about these things. So if you’re not interested in reading the intimate details — read: I’m going to mention periods! Specifically mine! — you probably should skip this blog update. (Also, it’s absurdly long.)

I moved out to Washington state in July of 2007 and at the time I was on a prescription of Armour thyroid, four pills a day. I had finally found a doctor in Wisconsin that listened to me, that didn’t insist all the issues I’d been experiencing to that point — extreme fatigue, inability to lose weight despite massive amounts of exercise and a strict diet, brittle skin, hair, and nails, and extreme pelvic pain and unusually heavy periods — were all in my head. He believed that Hashimoto’s patients who felt like I did were likely suffering from hypothyroidism that wasn’t evident from the tests the other doctors chose to do and he believed I really was hypothyroid and set about treating me.

I was separated from my then-husband (and we’ve since divorced) and so it was a period of time where fertility issues were not on my list of things to think about, at least while I sorted out what my marital future was going to be. This had been the initial issue that had set me on the path to finding out that I had Hashimoto’s in the first place. But I wasn’t really thinking about this — I was feeling physically in the best shape of my life.

I needed some physical activity so I took up belly dancing on a whim (which turned out not to be such a whim after all) and continued to do yoga at home and walk as much as possible. Over my first several months in Washington my weight seemed to be fairly stable, if a few pounds higher than where I was in Wisconsin: I was now around 178. That didn’t seem horrible, especially not when compared with the 197 I’d been at when I was at my lowest point health-wise. It didn’t seem to fluctuate much, and I knew I was eventually going to need to find a new endocrinologist to follow up with anyway so I figured I’d address it then.

I had really liked my doctor back in Wisconsin. He was clearly genuinely concerned about the well-being of his patients. He was an odd doctor — he had to have been in his eighties and close to retiring, and his office seemed to have very little of the modern equipment you’d see in other doctor’s offices. Still, he was helping me. But as much as I liked him I have to admit I had some doubts, doubts that at that time I didn’t put enough thought into because I was just so happy to finally be feeling better and to have found a doctor that would listen to me, and because of that I followed his prescriptions unquestionably. Unfortunately this meant that I sort of ignored the fact that he rarely seemed to remember the last time he’d seen me, which was always just a few weeks before, and always seemed to want to increase the dosage of my Armour thyroid medication without really explaining why.

Every time I went to fill the prescription the pharmacist would do a double take. “Are you sure you’re supposed to be taking four pills a day?” They’d ask incredulously. I insisted that’s what he said. They would call his office to be sure. They frequently handed my prescription over with great concern and at the time I merely chalked it up to people simply not understanding the genius of how this doctor had finally figured out how to fix my problems.

When my prescription was close to running out I made an appointment with a GP on my new health plan, but I wasn’t able to see her before my prescription would end. I contacted my doctor in Wisconsin to see if he could renew it. It turned out that my elderly doctor’s son, also a doctor, was now managing his patients and for some reason that wasn’t explained to me — it was the pharmacist that had contacted them — I was only allowed to get a prescription for thirty pills, one pill a day and no more. And after that he would not renew it. This was news to me and I couldn’t understand why.

I finally had my appointment with my new GP. When we covered my medical history and I told her I was taking Armour thyroid and how much, her eyes nearly popped out of her head. “My God,” she said in hushed tones. “Are you experiencing severe heart palpitations?” No. “Excessive bowel movements?” No. “Rapid weight loss? Extreme hunger?” No, and no. I felt perfectly fine. She explained that the dosage I was on was ridiculously high and she can’t believe any doctor would have prescribed that for me, and yet she couldn’t explain why I wasn’t experiencing any of the things she’d asked about. The only red flag that was raised for me was when she mentioned brittle bones. She said that decades ago Armour had been prescribed as a weight loss drug until they discovered that it caused early osteoporosis; women were breaking bones when they clearly should have been. At one point in my first few months in Washington I was sure I had mildly fractured a rib simply by putting weight on it — not something that should have happened but something I had considered to be just a freak accident. I hadn’t given it much thought beyond that until she said that. I began to wonder if this was the reason my previous doctor’s son had drastically and suddenly changed my prescription.

She said she wanted me to immediately stop talking all Armour thyroid. I balked at the idea. Armour had been my saving grace; there was no way I was just going to drop it altogether and go back to feeling the way I did before. She asked me to at least stay at one pill a day until my prescription ran out, and she would do some bloodwork to check my levels. She wanted me to stop taking Armour after the bloodwork was done so that we could take baseline bloodwork, tests with no Armour thyroid in it, to see how it would change, and to follow up with an endocrinologist she recommended in Seattle.

When I got my first batch of bloodwork back she reviewed it with me. She said I was hyperthyroid. I said that couldn’t be right. She said that it was and that it wasn’t unusual for patients to fluctuate between hyper- and hypothyroidism, and that her suspicions were confirmed that my Armour dosage was radically high. (I don’t have the numbers handy as I write this, but I distinctly remember the numbers being incredibly out of range, not just by a little bit, so much so that she wrote “OUT OF RANGE!!” in big, block letters with more than one exclamation mark.)

I really, really didn’t want to stop taking the medicine that I felt had helped me so much. But those numbers and her concern seemed pretty telling, so I stopped taking the thyroid medicine so that we could get a flushed-out, clean-start baseline bloodwork with the endocrinologist she recommended to me. I was absolutely sure that within days or weeks I’d feel terrible, but surprisingly…I didn’t. I actually felt just fine. The only difference was that my weight crept up by a few pounds — I was now around 181 — but I was realistic enough to know that I wasn’t eating at my best or strictly watching my calories, and that if I was truly hyperthyroid it was likely my increased metabolism suddenly ramping back down to normal levels but dealing with a calorie intake that was inappropriately high for it. Other than that I felt perfectly fine. I couldn’t explain it but I was certainly happy — I hate taking medication and was happy not to have to worry about taking any now, at least for the moment.

I went to see the new endocrinologist and went prepared, once again, to battle all the ridicule I’d experienced with other doctors about how I should just eat less and workout more and that I was perfectly fine, and maybe it was all in my head. But to my pleasant surprise this doctor really listened to me (and seemed genuinely concerned about all of his patients). I told him my story and told him that I know I have to get baseline bloodwork and that I know I seem fine right now but I did not want to go back to the way I felt before and I really didn’t want to encounter another series of doctors who insisted that it was all in my head.

He patiently explained to me that he frequently encountered patients who appeared to have the symptoms of hypothyroidism even if their TSH level — Thyroid Stimulating Hormone — was in the normal range, and that he would never accuse them of making up these symptoms or say that it was in their head (although he would go on to explain, in a much more rational way, that it actually sort of is in their head…just not in the way my previous doctors meant). He said that part of the problem is that symptoms of hypothyroidism are very generalized and could be from a number of things that aren’t hypothyroidism, something I already knew and agreed with him on. He said that according to his research he found that for his patients who experience this, it’s frequently from a mild seratonin imbalance and a prescription for a small dose of medication that addresses this usually solves the problem for them.

So in essence he told me that it really is in my head. But at least he did it in a way that wasn’t insulting.

We did the bloodwork and I took this knowledge home with me. In his office I didn’t make the connection that a seratonin imbalance is frequently a cause of depression and that the medication he wanted to prescribe (which I can’t remember at the moment) is also used in the treatment of depression. I made this connection when I got home and researched.

Now hopefully I’m not offending anyone when I say this, but I really bristled at this at first. My first instinct was to think, he just told me what the other doctors did, which is that I’m really just depressed and need happy pills. I don’t believe that depression is in any way a fake disease and I believe that depression should be treated if one has it. But depression is something I simply do not have. There’s no two ways about it. And the idea of taking a medication for it felt like I was, in a way, tacitly saying that I did.

It’s not the proper reaction but it’s the one I had at first. I never did begin taking the medication he suggested — more on that in a moment — but over the years I’ve come to a more rational understanding that just because a medication is prescribed for something doesn’t mean that it’s not also useful for other things. Seratonin imbalances can have wide-ranging effects and depression is only one of them, and not necessarily an effect that’s going to happen in everyone with a seratonin imbalance. A person with a seratonin imbalance may experience other effects but not have depression, but the medication may still treat those other effects.

Once my bloodwork came back I met with the doctor again. He said that my levels were normal, across the board. He asked me how I was actually feeling — I was so happy to hear him ask me that when previous doctors simply looked at the sheet of paper in front of them and dismissed me for wasting their time. By now I had been in Washington for at least a year or more and off of Armour thyroid for many months. I actually felt great, I told him. I told him my weight had increased slightly but unlike a few years before when I was on an 800-1000 calorie-a-day diet and exercising two hours a day, I couldn’t blame it on my thyroid this time. Apart from that, I said, I was feeling great. He asked me if I felt like I needed to investigate the seratonin medication he mentioned. I told him that if I felt great I didn’t want to take anything and he agreed there was no reason to, at least for now. But he suggested we make an appointment for six months out and if I felt like I needed to see him and that my health had changed, we could see what’s going on then.

I ended up canceling that appointment because I never really needed it. I’ve continued to feel great even off of medication, at least until recently, so I didn’t see much reason for it. I did recently get my yearly reminder to make my appointment to have my thyroid checked with him, though, so I do need to schedule that.

Which is good timing because as much as I’ve felt great since I moved out here I’ve noticed some changes in the last few months and I’m wary that my old issues are starting to come back.

My weight has increased to 187 pounds, yet my exercise level is the highest it’s been ever in my life. I belly dance a minimum of 2-3 hours two days a week, and several months ago that was actually at three days a week when I was teaching (and if you don’t think belly dance is a workout, come to one of our classes). I went hiking this summer several times, something I’ve never done before in my life. The weight increase is admittedly a cloudy issue as it’s easy to let pounds trickle on if you’re not religiously counting calories (which I’d stopped doing when I was easily maintaining 175-178 pounds), but given my exercise level I’m surprised that it’s sitting this high.

More concerning than weight changes, though, are changes in my cycle. (Yeah, here’s that TMI I warned you about.) I’ve been keeping a very close eye on changes here specifically because I figured they would be a strong indicator of changes to my thyroid health. Over the last few months my cycle has changed in subtle but consistent ways, with some really confusing behavior this month (that I won’t go into — I actually had it written out but deleted it; I’ll save you at least that much TMI at least).

I’ve also been getting sicker more frequently in general, something that happened with disturbing frequency at the low point of my health a few years ago. Prior to any health issues I was never one to get unusually sick — I’d get my one cold a year that everyone else got, too, and that was it. At my lowest health point I was sick all the time, at one point managing to get walking pneumonia, a sinus infection, and a burst eardrum all in one shot.

Once I started taking Armour I didn’t get sick at all, not even with a yearly cold. That continued for at least a year and a half or so once I moved to Washington and eventually stopped talking Armour. But in the last half of 2009 I was sick with at least three different things all within the space of three or four months, including flu followed by pneumonia. I hate going to the doctor and will always just tough it out; that’s how I got a burst eardrum a few years ago — what I figured was just a lingering cold that went on for two weeks got progressively worse until I came down with walking pneumonia and physically felt my eardrum burst and drain and go deaf, with the eardrum bursting being the thing that I finally figured I should see a doctor about. About two months ago I toughed out the flu but when my lungs developed what felt like water in them that wouldn’t go away I saw the doctor, who told me it had likely been swine flu and that yes, I had pneumonia (fortunately not bad enough for hospitalization, just some antibiotics). This was after at least two bouts with seriously nasty colds. This frequency is starting to concern me because it’s something that marked me feeling at my worst several years ago. Or maybe it was just a really bad cold season.

Fortunately, though, there’s some positive signs that maybe I’m not going back to the way I used to feel. One of the biggest indicators that something was really wrong with me, I felt, was in exercise. When I’m healthy, like most people, regular exercise makes me feel better, not worse. Back at my worst I couldn’t improve in my exercise — I couldn’t keep up with progressively less and less difficult workouts and ten minutes of exercise that most people would consider moderate made me feel like I was going to pass out. This wasn’t a case of simply needing to increase my endurance; my endurance had been better a year or two before this (I was a green belt in tae kwon do and walked quite a bit regularly) and had actually reduced despite consistent exercise, so clearly something was wrong.

These days, though, exercise still consistently makes me feel better. Physically I still feel like I’m in the best shape I’ve ever been in my life despite being about 15 pounds heavier than I’m comfortable with. I hike, I belly dance hardcore, I work out in the pasture hauling wheelbarrows and slinging shovels and hay. And this month I’ve started tracking my calories more consistently so I can monitor my weight more effectively against my workout schedule.

So ultimately I’m not really sure what to think about my recent health changes. Are these things normal? Should I be concerned? I’m not sure, but it’s time for me to make my yearly check with my doctor, and I think I’ll see what he says.

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