Coming up for Air

I feel like all the health stuff I’ve dealt with lately can be compared to drowning. I’ve been floating in this vast ocean of mysterious illness, looking desperately for wreckage of my former health (or at least, what there was of it), support from others, and whatever nutritional supplements I can find to cling to so that I don’t go under. I’m still dealing with profound fatigue and an uncontrollable sleep cycle. In the last few weeks, I developed severe headaches that just wouldn’t go away. I’m still always in pain. I think that I even caught a cold on top of all I’ve been dealing with.

There has been some good news, though – I’ve had two improvements. First the “Neuro-Endocrinologist” (another chiropractor), added CoQ10 and D-Ribose to my supplements, and they seem to have done something! My blood pressure is up now (usually in the 100/80 vicinity, but I’ll take it), but my resting heart rate has gone way up (a bad thing in the long run, I think). The muscles on the right side of my torso had lost a lot of muscle tone, and now they are improving slightly.  I still have trouble holding a chiropractic adjustment, but the adjustments do last just a little longer now. The second improvement has been in my attitude. For some reason, the thing inside my head that made me just want to be dead has vanished. Don’t get me wrong, I’m still easily pushed into a depressive episode, but I don’t constantly think about ending it all. It isn’t much, but I have to take what I can get.

In about 6 weeks, I will officially fit the definition of a person with Chronic Fatigue Syndrome. I thought to look this disease up when I had a physical a week and a half ago and it took me four days to recover from the minimal exercise they asked me to do. This condition was not recognized by the allopathic medical community until very recently, which makes me more than a little annoyed with our current state of the medical system.

My recent illness has had a purpose in my life – I’ve learned a lot about taking charge of my own health care. I thought I had been doing so for the last few years. You see, I was diagnosed with thyroid disease when I was in college. Since it’s autoimmune, I was informed that it would get worse over my lifetime. I accepted that. When I got out of college, an HMO doctor thought that since my thyroid levels were normal, I should be taken off the medications. I begged for a referral to an endocrinologist, and when I finally got that referral, I was a mess. Since then, I refused to let primary care physicians deal with my disease. Seems simple, right?

It turns out that it wasn’t so simple. I only saw doctors who were trained in the established test-based medicine culture. What this means is, as long as the patient’s lab values are in the “normal” ranges, the doctor has met the standard of care and can declare you “just fine.” Only, I haven’t been “just fine.” I quit college after my bachelor’s degree even though I fully intended to stay through vet school, and I had to quit working for pay when I was in my early 20s because I was so tired all the time. That doesn’t sound normal to me. I told my doctors just how many hours of sleep I needed, and even the good ones said “some people just need more sleep,” and they left it at that. No one ever bothered to look into possible underlying causes for my excessive need for sleep at such a young age. The even odder part (to me, at least) is that no one ever thought to treat the underlying immune-system disorder that was causing the whole thyroid dysfunction. I wasn’t told it could be treated.

It wasn’t until I discovered chiropractic medicine that I actually felt “good” again. Granted, it was short lived, but I truly believe that the fact that I was overdosed on my thyroid medication precipitated my current sad state of health. The thing is, the chiropractic doctors actually treat based on how the patient feels, not just how the lab tests look. This is how medicine used to be practiced before lab testing became all the rage. Don’t get me wrong, the chiropractors still do extensive testing to see what may be causing the symptoms, but being within the “normal lab range” isn’t what makes them think I’m healthy. These doctors see me on a regular basis, and they know I’m not ok. You know what it is the most amazing part about them? They actually listen to me, taking as much time as I need to hear everything I had to say. I was at the office for four hours one day, and at least half of that time was spent dealing with my health questions. When’s the last time an MD did that for me? Never.

I still have some ties to the MD practitioners, though. The chiropractors aren’t able to prescribe medications, and like it or not, I still need to supplement my thyroid hormones. I went to a new MD endocrinologist (since I’m not seeing the guy whose nurse treated me like and idiot) to get that part managed, but instead I learned another hard lesson. I was up front with the guy about why I left the last specialist. I explained that working with the chiropractors had changed my need for thyroid medication, and that I ended up overdosed. As soon as I said “chiropractor” the doctor stopped listening. He told me that people only go to those guys when they are desperate and that nothing they did actually affected the patients’ health. I explained that they found out I was allergic to gluten, and getting that out of my diet had significantly reduced the amount of inflammation I was dealing with, and consequently, improved my health. The endocrinologist informed me that “lots of people have gluten antibodies” and that most people have no problem with it. He then advised me to drop the chiropractors and let him manage my case alone. “Too many doctors chasing the same thing,” he said. I agreed with him on that point, but I didn’t like that he was telling me to drop the only doctors who ever listened to me. I then brought up another concern with him that was raised by a new primary care physician (who happens to be natural-medicine focused, but she is a member of the allopathic community). She said that she was concerned that I was having trouble converting T4 to T3 (an explanation of what this means can be found here). Most endocrinologists are focused on T4 only medications (Synthroid). Again, the doctor shut me down, telling me that it’s rare for T4 to T3 conversion to be a thyroid patient’s problem. He then ran tests to check for my current thyroid function.

I should have just dismissed the guy right there when I realized he wasn’t listening to me. I felt a little bullied and more than a little bit minimized (a word I learned from my chiropractor) when I was in his office. The problem is, I hadn’t quite regrown my backbone yet, and I was in no condition to stand up for myself. Over the last few days, I’ve asked myself, “Why should I have to stand up for myself at a doctor’s office? Isn’t the doctor supposed to be supporting me when I’m sick?”

I still wasn’t ready to completely drop the guy until I got the lab results back. The endocrinologist made notes on the report stating that, yes, I tested positive for Hashimoto’s Disease (I’ve known that for years – didn’t he believe me?) and that all my lab values were normal on my current dose of medication. Had he missed the fact that I still don’t feel well? What’s more, even though we discussed another doctor’s concern that I was not converting T4 to T3 very well, the guy didn’t even test my T3 levels. I felt that his lack of testing for the possible complication I brought up showed disrespect for both me and my other doctor. It’s not like I’m a newly diagnosed thyroid patient. As a matter of fact, it was clear to him from the beginning of our appointment that I am very knowledgeable about my condition. Why had he no respect for that?

I can’t lie – I’m really angry about this whole thing. I cannot believe that it should be this hard to get healthy in a country that has as much money as the United States does. Why does it have to be a rare thing to find a doctor who actually has the time to treat a patient adequately and who is respectful about the patient’s concerns? Just a few things to ponder.

edit: I changed the way I described the chiropractic neurologist – I put quotes around the word. I understand that he isn’t a medical doctor – that’s why I was seeing him. I like his model better. But things have happened since I wrote this that make it important for me to point out that, while I personally think that anyone who deals with neurology, no matter from what model, should be allowed to be called an neurologist (or if they study and treat endocrinology, endocrinologist, etc.), there are people in this world who take umbrage when you call a spade a spade.

 

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4 thoughts on “Coming up for Air

  1. Oh, that’s crappy. I’m sorry to hear the new doc was worse than the old one. But I really do belive in a place as big as Denver that there is a doctor who will listen to you. You are right – it shouldn’t be hard – and I’m so sorry to hear that it is. That just isn’t right.

    Can you locate an endocrinologist that is a DO? I’m sure that is a rare thing but they are generally willing to treat you as a whole, rather than as test results.

    • Well, the primary care doctor specializes in hormone replacement. I like her approach, and the fact that she is enthusiastic about working with the chiropractors. I’m going to let her handle the thyroid stuff, given that I feel she is better than the specialist. At least she listens.

  2. Hi 🙂

    Stumbled across your blog looking for something else. Have just read briefly, but your symptoms sound a lot like mine. I have Adrenal Fatigue. Contact me if you like 🙂

  3. Like Jennifer, I just stumbled across your blog. Anyway, I felt sad upon reading your blog. How’s your condition now? Hope you are okay, though. Were you able to find good doctors? Anyhow, there’s this good website that I found. It promotes healthy living, I guess. You may wanna check out. Here: http://products.mercola.com/coq10-ubiquinol/

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