Health update
I keep holding off on making an update cos I keep wanting to have some Actual Information to share, but enough people have been asking, and knowing that it's going to be the first thing people want to know has made me hold off posting about *anything*, and that's just getting ridiculous.
I still don't know much, except that it's unlikely anything truly serious is going on. I finally learned last week that I do have a thyroid nodule - this knowledge courtesy of an ultrasound I'd been lobbying to get for 8 months, and my fab new primary care doctor's willingness to order one. The nodule is probably what's been causing my thyroid pain for the past year and a half. However, it is probably not what's causing my still larger-than-normal-person level of fatigue. I also had a sleep study, but with inconclusive results.
So, my next steps are to meet with another endocrinologist. I fired my last endo after he refused to give me an ultrasound in February and in July, when I asked for them, and told me that there was no way I had a nodule because he couldn't feel it on an exam and because I didn't have thyroid antibodies active. I'm kind of inclined to write him a nyah-nyah letter once I know more, just to let him know that his refusal to give me an ultrasound put me 8 months behind in treatment. Anyway, hopefully I can convince a new endo to give me a fine needle biopsy, just so I can be *sure* that this nodule isn't evil, and then we'd decide whether I live with the pain (which most of the time is no longer such a big deal), or what.
On the fatigue front, I may still end up trying a supplemental dose of T3. T4 is the thyroid hormone that's replaced by my medicine, and T4 medication is supposed to help your body build T3, the other thyroid hormone, but sometimes it doesn't. My T3 levels are OK, but my new primary care doc, who is also a thyroid specialist but not an endo, thinks a supplemental dose might help. On the other hand, I may also have sleep apnea or another sleep disorder, despite the inconclusive result of the sleep study, so I'm going to need another sleep study. Regardless, my fatigue is much better than it was before I had my T4 balanced, so at least I can function normally, just with a higher need for sleep.
In general I feel vindicated, because since this whole thyroid thing began - in February of 2008! - I've had 2 different former primary care doctors and the endocrinologist all tell me various versions of nothing was wrong with me, and that there was no possibility I had a nodule. I only knew to push for an ultrasound because I found an article in a medical journal online (I could only access the abstract) about how some nodules are small enough they can only be discovered by ultrasound, and another several articles about how thyroid pain usually indicates a nodule. Each of these three former doctors insisted that nobody gets thyroid pain, that it's not a symptom of anything, that it was probably psychosomatic, that if it existed it was probably unrelated to the thyroid, etc. I kept getting told "Huh, well, that's not supposed to happen!" when I asked if maybe we shouldn't look into the pain just in case it was a symptom of something.
I'm frustrated as hell that if my first doctor had listened to me from the start, I could have had this much information a year and a half ago. Of course, since she refused for two months even to test my thyroid hormone levels, and then refused to give me medicine even though my levels were not in the normal range, I know now that I shouldn't have expected much from her. She was also the doctor who told my then-employer that I was malingering, which didn't help me any. My second primary care was nice, but she offloaded everything to the endocrinologist. The endocrinologist did get me up to an appropriate T4 level, but it really pisses me off that he clearly didn't know enough about thyroids to see my pain as an actual symptom or to take it seriously. He first saw me in September of 2008; he should have ordered an ultrasound then. Or when I practically begged him for one in February or July '09.
Anyway, I'm not stewing over this or anything. I just feel like I'm in limbo. Because I have believed that I have a thyroid nodule for most of the past year, the ultrasound results I got last week don't actually yet tell me anything new, they just confirm what I already knew from listening to my body. There's a slim, slim chance that the nodule could be malignant, but if it is, thyroid removal and recovery is relatively simple compared to other tumors. There are much greater odds that the nodule is just a result of the inflammation from the intense flu that started all this back in late January of 2008. In which case, living with and managing the pain and hoping it continues to fade slowly over time is totally fine.
In the meantime, I need to keep looking for a new job and thinking about longer-term career shifts. It's tough to do that when I don't know if I'm going to need to take time for thyroid surgery or something in the near future, or when or if my fatigue issues will consistently improve. I know I could work a job if I had one, but I feel weird pursuing longer-term career goals without better knowledge about my health.
I've learned a few lessons from all this, which I feel like documenting & sharing:
1) Always get a flu shot. Because sometimes the flu can really fuck you up. The current theory is that my genetic history made my thyroid predisposed to problems, so that when the flu attacked it, it was easily damaged (and more permanently than many viral thyroid issues). I have no idea if I'd have developed hypothyroidism on my own if I'd never had that flu.
2) Be ready to fight for what you need when dealing with the medical establishment. You are the expert on your body and its symptoms. If a doctor tells you you're not experiencing something that you are, indeed, experiencing, don't wait. Fire that doctor and get yourself another one, and if necessary yet another one after that. Don't give up until you feel satisfied that your experiences are being taken seriously. Enlist help if you are too ill to do this yourself.
3) Seek information and doctor recommendations online, especially on patient support forums or on websites for associations of doctors who work on your specific problem. For example, I've learned a lot from thyroid.org. Talk about your problems openly if you can, because people will come out of the woodwork with their own experiences and advice. I've learned so much more from the internet and friends with their own thyroid problems than I did from any of my doctors.
4) Be willing to live with ambiguity. None of us ever know that we are 100% healthy. Any one of us at any time could have a hundred different things wrong just waiting to be triggered and rear their ugly heads. Thinking about that is no way to live, though. It's tough to accept, but it helps a lot to remember that none of us is truly secure, and yet we all manage to get by anyway. Despite TV shows, a lot of the time doctors don't come up with a solid cause, not for months or years or sometimes ever. Not knowing what's wrong sucks, but it's where a lot of folks with medical issues are.
Anyway that's where I am. Most of the time I am pretty darn good, except for when I'm not, you know? I feel really hopeful in having some confirmation about the nodule, and in having next steps at all, and I'll let folks know when I know more. Expect a non-health update before long.
I still don't know much, except that it's unlikely anything truly serious is going on. I finally learned last week that I do have a thyroid nodule - this knowledge courtesy of an ultrasound I'd been lobbying to get for 8 months, and my fab new primary care doctor's willingness to order one. The nodule is probably what's been causing my thyroid pain for the past year and a half. However, it is probably not what's causing my still larger-than-normal-person level of fatigue. I also had a sleep study, but with inconclusive results.
So, my next steps are to meet with another endocrinologist. I fired my last endo after he refused to give me an ultrasound in February and in July, when I asked for them, and told me that there was no way I had a nodule because he couldn't feel it on an exam and because I didn't have thyroid antibodies active. I'm kind of inclined to write him a nyah-nyah letter once I know more, just to let him know that his refusal to give me an ultrasound put me 8 months behind in treatment. Anyway, hopefully I can convince a new endo to give me a fine needle biopsy, just so I can be *sure* that this nodule isn't evil, and then we'd decide whether I live with the pain (which most of the time is no longer such a big deal), or what.
On the fatigue front, I may still end up trying a supplemental dose of T3. T4 is the thyroid hormone that's replaced by my medicine, and T4 medication is supposed to help your body build T3, the other thyroid hormone, but sometimes it doesn't. My T3 levels are OK, but my new primary care doc, who is also a thyroid specialist but not an endo, thinks a supplemental dose might help. On the other hand, I may also have sleep apnea or another sleep disorder, despite the inconclusive result of the sleep study, so I'm going to need another sleep study. Regardless, my fatigue is much better than it was before I had my T4 balanced, so at least I can function normally, just with a higher need for sleep.
In general I feel vindicated, because since this whole thyroid thing began - in February of 2008! - I've had 2 different former primary care doctors and the endocrinologist all tell me various versions of nothing was wrong with me, and that there was no possibility I had a nodule. I only knew to push for an ultrasound because I found an article in a medical journal online (I could only access the abstract) about how some nodules are small enough they can only be discovered by ultrasound, and another several articles about how thyroid pain usually indicates a nodule. Each of these three former doctors insisted that nobody gets thyroid pain, that it's not a symptom of anything, that it was probably psychosomatic, that if it existed it was probably unrelated to the thyroid, etc. I kept getting told "Huh, well, that's not supposed to happen!" when I asked if maybe we shouldn't look into the pain just in case it was a symptom of something.
I'm frustrated as hell that if my first doctor had listened to me from the start, I could have had this much information a year and a half ago. Of course, since she refused for two months even to test my thyroid hormone levels, and then refused to give me medicine even though my levels were not in the normal range, I know now that I shouldn't have expected much from her. She was also the doctor who told my then-employer that I was malingering, which didn't help me any. My second primary care was nice, but she offloaded everything to the endocrinologist. The endocrinologist did get me up to an appropriate T4 level, but it really pisses me off that he clearly didn't know enough about thyroids to see my pain as an actual symptom or to take it seriously. He first saw me in September of 2008; he should have ordered an ultrasound then. Or when I practically begged him for one in February or July '09.
Anyway, I'm not stewing over this or anything. I just feel like I'm in limbo. Because I have believed that I have a thyroid nodule for most of the past year, the ultrasound results I got last week don't actually yet tell me anything new, they just confirm what I already knew from listening to my body. There's a slim, slim chance that the nodule could be malignant, but if it is, thyroid removal and recovery is relatively simple compared to other tumors. There are much greater odds that the nodule is just a result of the inflammation from the intense flu that started all this back in late January of 2008. In which case, living with and managing the pain and hoping it continues to fade slowly over time is totally fine.
In the meantime, I need to keep looking for a new job and thinking about longer-term career shifts. It's tough to do that when I don't know if I'm going to need to take time for thyroid surgery or something in the near future, or when or if my fatigue issues will consistently improve. I know I could work a job if I had one, but I feel weird pursuing longer-term career goals without better knowledge about my health.
I've learned a few lessons from all this, which I feel like documenting & sharing:
1) Always get a flu shot. Because sometimes the flu can really fuck you up. The current theory is that my genetic history made my thyroid predisposed to problems, so that when the flu attacked it, it was easily damaged (and more permanently than many viral thyroid issues). I have no idea if I'd have developed hypothyroidism on my own if I'd never had that flu.
2) Be ready to fight for what you need when dealing with the medical establishment. You are the expert on your body and its symptoms. If a doctor tells you you're not experiencing something that you are, indeed, experiencing, don't wait. Fire that doctor and get yourself another one, and if necessary yet another one after that. Don't give up until you feel satisfied that your experiences are being taken seriously. Enlist help if you are too ill to do this yourself.
3) Seek information and doctor recommendations online, especially on patient support forums or on websites for associations of doctors who work on your specific problem. For example, I've learned a lot from thyroid.org. Talk about your problems openly if you can, because people will come out of the woodwork with their own experiences and advice. I've learned so much more from the internet and friends with their own thyroid problems than I did from any of my doctors.
4) Be willing to live with ambiguity. None of us ever know that we are 100% healthy. Any one of us at any time could have a hundred different things wrong just waiting to be triggered and rear their ugly heads. Thinking about that is no way to live, though. It's tough to accept, but it helps a lot to remember that none of us is truly secure, and yet we all manage to get by anyway. Despite TV shows, a lot of the time doctors don't come up with a solid cause, not for months or years or sometimes ever. Not knowing what's wrong sucks, but it's where a lot of folks with medical issues are.
Anyway that's where I am. Most of the time I am pretty darn good, except for when I'm not, you know? I feel really hopeful in having some confirmation about the nodule, and in having next steps at all, and I'll let folks know when I know more. Expect a non-health update before long.