Posted: July 3rd, 2006 | Author: Hellchick | Filed under: Health, Rant | 13 Comments »
It occurs to me that while I’ve talked about this at length in piecemeal in some of my favorite forums, I’ve never actually told the whole story or the end result here. If you’ve arrived here because of a search about thyroid problems, Hashimoto’s syndrome, or hypothyroidism and have encountered a line of doctors unwilling to listen to you, I think you’ll find this story interesting. This discussion is going to run close to the edge of Too Much Information(tm), but I think it’s important to talk about everything that’s happened for the benefit of those who might experience something similar to my story.
Ever since adolescence I’ve been overweight. I can’t remember a time in my adult life when I have, under normal healthy conditions, been less than 185 pounds. I’m tall at 5’9″ and I come from both Finnish and Norwegian families, which means I have the body of a Scandinavian farm girl, but even 185 pounds is heavy on my frame. At some point in the last five years or so my weight hit a maximum of 197 pounds. Because I have a large frame, I’m curvy, and I’m tall, most people have underguessed my weight, but it was still 197 pounds up until a few months ago.
For most of my adult life I’ve also had very dry skin, brittle nails, dry and brittle hair, and flaky eyebrows. In fact, for years my husband would joke about my “rogue eyebrow” (my left one) as he brushed flakes away from the outer edge. We never thought anything of it — we thought it was just me. My periods had also never been regular at all — my average cycle was 52 days, and there were periods of time when I would go three months or so without getting my period at all, or I’d get it two weeks after I’d already gotten it. When I asked doctors about this I was told that every woman is different and it was nothing to be concerned about.
When I was about 24 or 25, I wanted to join the National Guard. To do so, I had to be a certain weight or body fat percentage for my height and age. Their requirement was 169 pounds or 32% body fat. So I began working hard: I added more exercise and I ate better. I was 185 and I stayed that way for quite a while. At my weigh-ins at the Guard post, they were dismayed at my lack of progress and insisted that I really had to stick to a diet and exercise regimen. I was, but since I wasn’t seeing results I increased my regimen of exercise and reduced my caloric intake even more. I only lost a few pounds and I remained heavy. I continued to push myself further and further, trying to lose more weight. At my lowest I was at 172 pounds, still considered heavy by any standard for my height. The weight wasn’t even muscular weight — it was pudgy fat. The only way I was able to get to this weight and maintain it was by exercising for two hours every single morning and reducing my food intake to a single salad per day and nothing more. I was exhausted, I was tense, and I was mystified at how two hours of weights and aerobics and practically no food could still result in me being pudgy and overweight. And most of all, tired. I was exhausted. I saw a doctor, and he said, “your body simply doesn’t want to get any lower than 172 pounds. I don’t know what to tell you.” I gave up trying to get into the National Guard, and while I kept a normal exercise regimen and diet, my weight ballooned back up to about 190 pounds.
About five years ago I began asking my doctor in California about why I hadn’t gotten pregnant yet. She ran a few blood tests that led to an MRI, and that MRI revealed that I had something called a pituitary adenoma, or a small, benign nodule on my pituitary gland. The adenoma was, supposedly, pressing on my pituitary gland slightly and causing my body to produce elevated levels of certain hormones that fooled my body into thinking it was pregnant all the time. (This actually explained a lot of things for me.)
She prescribed Dostinex for me and told me that I had to follow up with an endocrinologist. The Dostinex was going to help offset the extra hormones and I would see a major difference — my periods would finally be regular. I followed up with an endocrinologist, as my GP had suggested.
He did blood work and found out that in addition to my pituitary issue, I had something called Hashimoto’s Thyroiditis, a not uncommon autoimmune disorder in which the body mistakes the thyroid gland for a foreign agent and produces specific antibodies to destroy it. From what he explained it was common to have a pituitary condition in addition to a thyroid problem as the two were closely related. When he asked me about previous doctors and the fact that my periods had always been irregular, he was appalled when I told him that no other doctor had been interested. He said that women’s health care was in a terrible state and many women were never listened to when they brought up issues like that to their doctor. This made me feel that I’d found a good doctor.
Like anyone would do, I researched Hashimoto’s Thyroiditis on the web. I read that some Hashimoto’s patients can experience hypothyroidism, a condition in which the thyroid gland is underfunctioning. The symptoms included dry, brittle skin and hair, exhaustion, inability to concentrate, irregular periods, infertility, inability to lose weight or a weight gain, and — oddly specific — flakiness or balding on the outer edges of the eyebrows.
I was stunned. Could this have been causing all those problems for me? Could this by why I hadn’t been able to get to a reasonable weight despite a good diet and exercise? At my next appointment I told this doctor that I’d read about it and how relieved I was to have found an explanation for these things. He gave me a patronizing smile and said, “you don’t have those symptoms.” I looked at him oddly. I wasn’t making them up. I explained that I’d had them forever, especially the flaky eyebrows. He smiled again and waved his hand away. “No, you couldn’t be experiencing those. You would be very far advanced in hypothyroidism.”
So this doctor who’d just told me at my last appointment that female patients get short shrift was telling me I was lying, or that I was a hypochondriac. He said that my Thyroid Stimulating Hormone (TSH) level was within the normal range, and therefore I couldn’t be experiencing symptoms of it being out of that range. There wasn’t anything I could do, so I simply went on with life, continuing to experience these same symptoms and continuing to not get pregnant.
We moved to Wisconsin and I continued to take Dostinex. By the time we’d moved I’d been on it for three years. Most patients are supposed to have gotten pregnant in less than a year on the medication. My endocrinologist didn’t seem phased by this and simply kept me on it.
By the time we’d moved to Wisconsin, I was the heaviest I’d ever been: 197 pounds. Just a couple of months after we moved, I noticed that I was feeling incredibly exhausted all the time. At 8 pm I’d be sitting on the couch, literally unable to stay awake. Sometimes I’d doze off while sitting at the dining room table in front of my laptop. I’d go to bed at 8 pm, get eight hours of sleep, and wake up exhausted again the next day. I had a workout regiment of 45 minutes of exercise four times a week in the mornings. I’d force myself to get through my workout, but as the months went on I found that instead of being able to increase the difficulty of my workout, I couldn’t even make it through easier workouts than I’d done before. I was getting more and more exhausted. Doing ten minutes of light housework had me sititng on the couch trying to keep from passing out. To be honest, I felt like a cancer patient. I was exhausted and sick all the time.
More troubling than this was a change in my period. During the first two days I began to cramp so painfully that I’d feel nauseous and nearly throw up. Until a year ago I’d normally just have to take a couple of Advil for normal cramps. I had to increase that to three Advil, and then finally four, with four pills still not doing the trick. At random times of the month I would get stabbing pain in my abdomen and cramps so bad that I had to lie down and take more Advil.
All of this continued to get worse over the course of our first year in Wisconsin. I asked my GP about the exhaustion; his explanation was that I had just moved from California and simply wasn’t used to the seasonal differences here. I asked him about the abdominal cramping; he did all the gynecological tests and found nothing. I asked him about my inability to lose weight despite eating right and exercising regularly; his explanation was that he didn’t have an explanation. Work out more, eat less. At this time I was already down to about 1000 calories a day — even working out I was simply never hungry. I could eat one small meal a day and not be hungry until the next day. It was as if my metabolism simply was not burning very well. I even tried eating more food in case I wasn’t getting enough and my body was going into starvation mode. It didn’t work — I experienced the same results and no change in weight.
He recommended that I follow up with a new endocrinologist here since I was still taking Dostinex and I needed to follow up on the thyroid issue anyway. (My previous endo had told me that Hashimoto’s patients had to get regular check ups on their thyroid antibody count to find out if they’d gone hypothyroid — the condition that that doctor had told me I couldn’t have been experiencing — so they can begin taking thyroid medication.)
I found the only endo available on my new insurance plan. I showed up and, because the medical establishment here is heavily involved in the UW medical school, spoke with the endo’s medical intern (or whatever you call them). I spoke with her for 20 minutes and went through everything I’d been experiencing: the increasing abdominal pain, the increasing exhaustion, the weight gain and inability to lose weight, and the general feel of unwellness. She wrote some things down, explained that she’d speak to the endo, and would return with him for the actual exam.
The old doctor walked in and looked at her notes. He immediately dismissed everything that she’d suggested following up on. He then asked my why I was still taking Dostinex, as if it was my fault for some reason. I explained that my previous endo had continued to prescribe it. He said that it was unusual for doctors to prescribe Dostinex for longer than one year because they “don’t know what kind of effects it will have.” Oh, great.
It should be noted that this doctor stared at my chest during the whole five minutes he saw me.
He then palpated my thyroid — a common thing to do with thyroid problem patients — so roughly that he was choking me. He grunted and said it felt fine. He said that he was going to prescribe bromocryptine for the infertility. He kept focusing on fixing the infertility, which by now was pretty low on my list of health priorities.
I asked him about the abdominal pain, the lack of weight loss and the exhaustion. He literally waved his hand dismissively and his exact words were, “I don’t know. We can check your bloodwork, but we won’t find anything.” He then proceeded to write out the infertility medication prescription and sent me on my way. The visit took five minutes.
I left the office thinking that I was a hypochondriac and that it was all in my head. For a couple of months I continued to feel abdominal pain, continued to be frustrated with my ill health, and just assumed that I was going to feel like this for the rest of my life and that I’d better get used to it.
Then I snapped out of it and figured I’d better find yet another doctor, someone willing to listen to me. I did some thyroid-related research and found a doctor in Milwaukee, an hour and a half away, who apparently was very interested in patients who’d been told the same thing I’d been told. His name is Dr. Burton Waisbren and I made an appointment.
His office is somewhat retro and he’s very old-fashioned. This almost put me off but at this point I was willing to try anything. He sat down and talked to me about everything I’d been through medically up to this point. He said that he’d heard my story many times before and that doctors used to do a certain kind of test for hypothyroidism called the T3 and free T4 test. This measured certain compounds that your pituitary and thyroid both dealt with. At some point in the recent past, he explained, doctors switched to measuring only TSH. He believes that the older tests were more accurate and he’s found that people with normal TSH levels will show abnormal T3 and free T4 levels and have all the symptoms of hypothyroidism, which he said it sounded like I had.
He did the requisite bloodwork and then I saw him for a follow up. He said that I was definitely hypothyroid — my T3 and free T4 tests had come back showing it, and what was more, my Hashimoto’s antibodies were incredibly high. He’d also done a few other tests that show I have a predilection towards autoimmunity (where my own body wants to attack itself) and he wanted to begin a regimen. He explained that we would try a few things and see what worked for me, but that we wouldn’t stop until we found something that worked. He said that he wanted to make sure that I felt better first before we became concerned with any infertility issues.
One of the things he had me do was get a thyroid uptake scan and have another MRI to check on the pituitary adenoma. I went to the radiology department of the UW clinic and had the scan done. The radiologist said that everything looked normal and my uptake was smack in the middle of the normal range. So he scoffed when I told him that I was having another doctor take a look at this. He insisted I was wasting my time and that what I was looking for would not be found in my thyroid condition.
My doctor got the results and started my regimen. What worked was the first thing he tried: Armour Thyroid medication. He started me on a low dose and then followed up with me a month later, where he increased it from three pills a day to four. And let me tell you, I’ve never felt better. My exhaustion is gone, my skin isn’t so dry anymore, and the weight is dropping off. This morning I weighed in at 176 pounds. I’ve lost 21 pounds so far since I’ve started taking Thyroid. I no longer fall asleep at 8 pm — the other night I did yoga at 9 o’clock. I don’t feel sick all the time, and I’m less prone to getting sick (it seemed that in the first year of being in Wisconsin I came down with colds and even walking pneumonia all the time). I started taking tae kwon do again, and instead of feeling like I’m going to die after a strenuous workout, I feel toughened up and exhausted in the right kind of way. I finally feel normal!
I’m happy that I pressed on and found a doctor who will listen to me. If you’ve been told this kind of stuff is in your head, don’t listen to them. Keep looking and find a doctor who will actually listen to your symptoms. It’s your body, and you’re the only one who knows for sure when something’s wrong.
Posted: August 7th, 2005 | Author: Hellchick | Filed under: Health | 2 Comments »
I’m not usually one to go to a doctor for…well, anything I can possibly avoid. I often feel guilty going to a doctor because I figure there has to be someone in more need of this doctor’s time than me. Unless my life is being significantly impaired — i.e., my leg has fallen off and needs reattaching — I don’t need a doctor.
That said, there are some strange things occuring these days that have prompted me to talk to my endocrinologist.
Why am I seeing an endocrinologist? Glad you asked.
It started a few years ago back in California. When Len and I decided to put the fate of our status as parents in the hands of Mother Nature, we really kind of expected it to actually happen at some point. When it didn’t, I saw my doctor. She found out that I had elevated levels of prolactin in my body that was keeping me from getting pregnant. She sent me to an endocrinologist to follow up.
He found that I have a prolactinoma, a small growth on my pituitary gland that causes the extra hormone secretion. He said he also found that I have an enlarged thyroid on the right side, and something called Hashimoto’s Thyroiditis, an auto-immune disorder that causes my body to think of my thyroid as something to be targeted for destruction, so it creates antibodies to work against it. The level of antibodies has to be monitored regularly because at some point they may become great enough to actually begin destroying my thyroid, at which point I’ll need to go on synthetic thyroid medication.
I had never heard of Hashimoto’s before, so I looked it up. Now, both the beauty and the curse of the Internet is that it can arm you with more knowledge about something than you’re prepared to handle. But I know that, and so I really did try to filter for only truly informative, legitimate links.
What I learned was that Hashimoto’s is the most common cause of hypothyroidism. I then looked up hypothyroidism and found out that it’s a situation where your thyroid is underfunctioning, which can lead to a bunch of things including weight gain, dry and brittle skin and hair, inability to concentrate, and fatigue. The strangest of these symptoms was that the outer eyebrows can either be really dry or lose their hair.
Suddenly the light went on for me. For years Len had made fun of my “rogue eyebrow”; the outer part of my right eyebrow was in a continuous state of flaking and hair loss. The weight gain suddenly clicked as well — while trying to lose weight to get into the National Guard years before, I’d been unable to get down to what should have been a normal weight for me without working out two hours every morning and nearly starving myself to death. My skin and hair, since I was in my late teens, had been unusually dry — despite moisturizer my shins literally looked like someone put talcum powder on them (it wasn’t — it was just a gross display of my dry skin), and my hair was constantly brittle and breaking despite good hair products. Maybe the Hashimoto’s I’d just been diagnosed with had always been the cause of these things.
On the next doctor’s visit I told him how I was actually relieved to have heard this because it explained so much about my physiology that had been unexplainable up to then. The doctor looked at me, smiled and said, “no, you couldn’t have had those symptoms. You would have been in a very advanced state if you did.” I explained that I did indeed experience those symptoms. “No, you couldn’t have.” He simply smiled and insisted I did not experience any of those.
I was too taken aback to know what to say next. He prescribed Dostinex for the prolactinoma on my pituitary and explained that the Hashimoto’s was simply a marker and that I couldn’t experience any symptoms of hypothyroid on it. His explanation of why went over my head since I’m not exactly an expert on endocrinology.
I moved here to Wisconsin and continued to take the Dostinex. When my prescription was going to run out, I figured I’d make an appointment with a new endocrinologist and follow up with him or her.
A few months after moving out here, things began to change, the biggest of which was my fatigue levels. I had started working out two months after moving in addition to the daily yoga I’d already been doing for a year prior to that. I had also started eating really well before that when I began doing yoga. So my diet and exercise routine was pretty envious of most people. Yet I was so tired all the time (and still am). By 9 pm each night I was falling asleep wherever I was sitting, despite getting 7-8 hours of sleep a night, which gradually increased to 9-10 hours as I became more tired and had to go to bed early.
And despite all the exercise, yoga, and good diet I was — and continue to be — sitting at 195 pounds. Despite my tall and large frame, 195 is still not a healthy weight for me, especially given that it isn’t a lean and muscular 195 but a pudgy and flabby 195. Despite exercise and yoga. My exercise routine included cardio and weight workouts, and yet my body shape wasn’t changing, I wasn’t decreasing in inches in any areas at all, and I wasn’t gaining any muscle strength; the amount of weights and reps I could do several months before remained the same despite a religious 5-day workout schedule.
I tried all kinds of things — decreasing my caloric intake (maybe I’m eating too much); increasing my caloric intake (maybe I’m not eating enough and my body is going into starvation mode); eating more protein (maybe that’s why I’m so tired all the time); eating more carbs (maybe I just don’t have enough fuel). Every change would give me about a 4-5 pound weight loss that would last about two weeks. Then the weight came back to 195 pounds. The protein helped my fatigue levels for about two weeks. Then my body adjusted and despite the daily protein shake, I was back to falling asleep at a whim.
Other things have happened that I probably shouldn’t detail in a public blog, but if you can’t talk about things clinically in a post about medical stuff…well, you should stop reading now. The additional problem I have is that in the last six months or so, my periods have become excruciatingly painful for one day out of the cycle, and now I’m vomiting through the pain. While I’d always had some pain and just needed to take Advil to get rid of it, the Advil isn’t helping as much anymore and the vomiting is new.
And last month I noticed that my left eyebrow is going bald on the outside.
All of this worried Len and he pestered me to talk to the doctor about it all. After asking my general practitioner about it and explaining the diagnoses of the prolactinoma and the Hashimoto’s, he sent me to an endocrinologist.
Now, let me state that I’m well aware that I’m not a doctor. But I’m a reasonable adult concerned now about my medical health, so I tried to put the pieces together. Increased fatigue, increased inability to lose weight, and loss of hair on my eyebrows, coupled with the fact that I have Hashimoto’s. Okay, I thought, it sounds like my thyroid is in some kind of new stage. I’d better get this checked out.
The doctor’s resident — at least, I think that’s who she was — sat down and talked to me and listened to everything I said above. She spent about twenty minutes with me, complete with follow up questions.
After she walked out, the doctor I was told I was seeing walked in. He was an older man with a thick accent that sounded Eastern European. He palpated my thyroid so roughly that I was choking. He explained that he was putting me on bromocriptine for the prolactinoma to help with the infertility, and that I should see a fertility clinic because I’m running out of time to “make babies.” I asked him about the things I’d come in to see him for, the fatigue, the weight problem.
He actually waved his hands dismissively and said, “We can check your bloodwork but we won’t find anything.” I asked him what could be causing those things. He shrugged and said, “I don’t know.” He wrote out my bloodwork sheet to take to the lab and said I was done there. He’d spent five minutes with me, most of which he spent staring at my chest, and completely dismissed everything I’d come to him for.
So I left. I went down and got my bloodwork, and that was that. He’s the doctor, right? I mean, if nothing’s wrong with me, he would know. Wouldn’t he?
As I put more thought into it, I got more and more angry. This wasn’t in my head — these things I’m experiencing are real. I received the report about my bloodwork and saw that my TSH levels — which determine your thyroid fuction — are “within normal range.” So therefore, nothing was wrong with me.
Then about two weeks ago a a friend of mine was diagnosed with thyroid cancer. It seemed fairly out of the blue; she’s a young, healthy woman who suddenly began getting very tired all the time and had some unexplained weight gain. And it turned out to be thyroid cancer.
Now, I don’t think I have cancer. But you can imagine how much this has really spurred me into thinking that something really is wrong with me.
I don’t understand how I could be experiencing very obvious hypothyroid symptoms when I have Hashimoto’s and hear two doctors tell me that I’m perfectly normal and must be imagining things.
These days I’m not working out (and I haven’t gained or lost any weight from this change either). Because when I do work out, ten to fifteen minutes into my workout I feel like I’m about to pass out, so I have to sit down on the couch, whereupon I have a hard time staying awake. If I do any yardwork or housework I have to take frequent breaks or I feel like my legs will give out from underneath me.
But apparently I’m perfectly fine. Really.
