All the Little Pieces

I finally have some answers about what has been wrong with me. Really reasonable answers. Answers that give me something to aim for.

This all goes back to the fact that I started a program designed to get my immune system under control just under six months ago. The short version of the story is that the program worked. It worked well, and it worked fast. In maybe two months or so, my immune system was under control, no longer viciously attacking my thyroid gland all the time. On the surface, that’s great news! The thing is, I was still treating the underactive thyroid with the same dose of medication I had been on before the program. My primary problem is not hypothyroidism, but rather an immune dysfunction that is ultimately associated with the adrenal glands and cortisol. While I was diagnosed with hypothyroidism, I was really just somewhere in the oscillation between hypothyroidism and hyperthyroidism. Since I treated the cause of the problem instead of the disease that happened to be just a symptom, everything should have gotten better downstream.

Since I had been hypothyroid for so many years (I’ve been treating it for maybe eleven years, now), no one really thought to look for hyperthyroidism. That’s really too bad, because so many bad things started to happen. The breathing and chest pain issue came back. I had heart palpitations (when your heart beats really hard, so much so that you become very aware of it – it seems like a heart attack the first time it happens, before you know what’s going on). Next I started to have trouble staying asleep, getting maybe four hours of sleep per night. At first I felt really good, maybe for three weeks. Eventually, though, being in a hypermetabolic state took its toll on me. I started to lose weight at an alarming rate. I developed a low-grade fever (usually around 99.6) that was accompanied by nervous breakdowns. In the last few weeks, I started experiencing numbness or constant pain in certain nerves. To top it all off, this whole time I’ve been dealing with burning muscle pain that is only partially and temporarily relieved by massage. Anti-inflammatory medications just didn’t work for me. I was such a mess. Still am, for the record. For the last two months, I’ve been sick to the point where it interferes with having a normal life.

I stopped taking the thyroid medication for a month. Normally, this isn’t a good idea, but I resorted to that option because I had trouble communicating with my endocrinologist. When I knew for certain that I was hyperthyroid (my chiropractor did regular blood tests to confirm this), I called my endocrinologist’s office. The thing is, they make you talk to a nurse rather than the doctor himself. She then takes the message to the doctor, who tells her what to tell you and she calls back. This process is ridiculous. First of all, it’s a literal game of telephone – things get lost and confused in the translations. Second, had I been able to speak to the doctor, he’d have been able to ask some very relevant, very important questions. As it stood, I told the nurse that my thyroid medication was at a much too high dose, and that I thought it needed to be dropped significantly. She went to the doctor, who told her that I was just having a normal fluctuation and should only drop the dose by a little bit. This process took two days. I informed her that I didn’t think that this was just a fluctuation, that I had been seeing a chiropractor who managed to control the underlying disease, and that I thought we really needed to reevaluate my dose as if I were a newly diagnosed thyroid patient. The nurse was really rude to me. She asked “so you think your chiropractor cured you and that you don’t need medication anymore?” I informed her that, no, he didn’t cure me, but he did manage the underlying disease, which really affects my needs for thyroid medication. She said she’d bring it to the doctor, but she never called back. She had such an attitude with me, and I knew she really didn’t get what I was trying to tell her. She seemed to think I was some kind of idiot. I chose to take matters into my own hands because I was being dismissed.

It gets worse. The levels of thyroid hormone in my system left me in a state of thyrotoxicosis. What this means is that the levels of thyroid hormone in my body had gotten to a toxic level. If left untreated, I was at risk for a thyroid storm, which is the release of a whole bunch of thyroid hormone all at once. Thyroid storm can be fatal. I don’t think that I ever quite experienced a thyroid storm, but I did get pretty close. The endocrinologist would have known that had he spoken to me personally.

The best thing I could have done in that circumstance was to discontinue the meds (given that I couldn’t get the doctor to prescribe a significantly smaller dose, which would have been the best option). After a few days, most of the symptoms of hyperthyroidism, particularly the sleeplessness and the heart palpitations, began to subside. I decided that I would give the medication a month to clear my system, then I would go to my primary care physician (who is much more accessible) to get my medication needs reevaluated.

While I was off the thyroid medication, another complication appeared (which exemplifies why it’s generally not a good idea to quit taking the meds cold turkey). I began to have severe emotional crashes. I was suicidal much of the time, and just plain critically depressed the rest of time. I started to experience a lot of physical pain, from nerve pain to muscular pain. I would sleep twelve hours a night and not wake up rested. With naps, I was sleeping about sixteen hours a day. It was a complete disaster. The reason for this is complex. Because my metabolism was so high for so long, it overtaxed my adrenal glands. The adrenal glands are responsible for producing cortisol, which regulates inflammation and stress responses in the body (in addition to a few other things, but these are the relevant functions for my story). The high metabolism forced the adrenal glands to produce cortisol at a very high level to combat the stress of being generally overworked. The thing is, the adrenal glands can only do that so long before they, too, become tired. When my metabolism slowed down and stopped stimulating the adrenal gland so aggressively, the adrenal gland began to take breaks, effectively collapsing from exhaustion.

This left me in a very precarious state. Any stress, no matter how small, caused an extreme physical reaction in my body. Muscles cramped up, and inflammation plagued me. I had nervous breakdowns. I also had this feeling that I needed to be dead – it was like a call of nature. Often when someone is suicidal, it’s a reaction to a situation that makes them feel frustrated and powerless. The desire to kill oneself is fueled by anger and passion (I’ve been there, I know). This was a very different feeling. It was like my body knew it was malfunctioning on a critical level, and maybe it figured I was dying already, so might as well make it quick? The only way I could stop myself from doing something about it was to call someone.  This happened a lot.

I got some supporting supplements from my chiropractor, and things got a little more manageable. I never felt “good” (and I still don’t), but I was at least stable and not constantly in danger of offing myself. I reintroduced the thyroid hormone into my body at a much lower level, and it also helped a bit. It wasn’t long, though, before I became hyperthyroid again. This is where I’m at now. For about two days, I got normal levels of sleep and woke up comparatively (but not properly) refreshed. As the hormone level came back to toxic levels, I stopped sleeping for more than four hours at a stretch, and even that sleep wasn’t (isn’t) really solid – I wake up several times per night. The heart palpitations started again, and I had trouble breathing accompanied by chest pain. I gave it ten days to settle out (because it may have been my body just getting used to the hormone again), but it only got worse. I just had a blood draw today to confirm the hyperthyroidism, and tomorrow the doctor should have the lab results to justify dropping the dose again. I am nowhere near out of the woods.

The hyperthyroidism is also responsible for another mysterious, chronic condition I’ve had – the chest pain and shortness of breath. Because I just had to know what was wrong with me, I spent many, many hours researching my symptoms, conditions, etc. Here’s what I learned:

Excess thyroid hormone has the effect of dilating (relaxing) the blood vessels, and if you’re thyrotoxic, it can lead to low blood pressure. No doctor has ever believed me when I said I thought my blood pressure was too low – with the focus on high blood pressure in this country, it seems doctors can forget that low pressure is a problem, too. The doctors tell me that it’s great that I have such low blood pressure and immediately move on to other matters. Recently my resting blood pressure was measured at 98/56. Ideally, your systolic blood pressure (the top number) will be somewhere between 90 and 120. This indicates that your heart is contracting well and properly supplying blood to your body. The diastolic blood pressure should be between 60 and 80. This means that when the heart relaxes, the ventricles are properly refilling for the next contraction, pushing blood back into circulation. My diastolic pressure was too low – that means that my heart is unable to properly refill after a contraction. This condition, when it leads to pulmonary edema (fluid build-up in the lungs) is known as Diastolic Congestive Heart Failure (or left-sided heart failure). The link I included describes the condition pretty well, except that it leaves out another possible cause of the dysfunction – heart palpitations. Somewhere between the fact that my blood pressure is too low to force blood back into the heart and the fact that my heart beats too fast, giving the blood less time to go where it is supposed to, my left ventricle was not refilling. This leads to angina (chest pain). Think of it like vomiting when there is nothing in your stomach – it hurts more when that happens. The blood that didn’t make it into the ventricle then backs up into your lungs, creating pulmonary edema. It was upon reading the three articles I referenced in this paragraph that I figured out what was going on. One of the articles I linked to above notes that the kind of heart failure I have is often missed by doctors. But I caught it.

I even think I know the mechanism by which the whole thing is happening to me. There are two times that my blood pressure is inappropriately low: when I exercise and the blood pressure does not rise enough to meet the demands of my body, and when I rest for long periods of time. I believe that when something (the thyroid, the brain, the adrenal glands – who knows?) detects that my blood pressure is at dangerously low levels, my body produces adrenaline to increase my heart rate. I think that’s how it generally works, and that’s why your blood pressure naturally rises when you exercise. The complication occurs when my blood vessels are too relaxed to respond to the rapid heart rate. I think, but am not certain, that if my thyroid hormone levels are more carefully regulated, this problem can reverse itself.

I’ve presented my theory about the heart issue to four of my doctors so far. When they heard my thought process, they all said to me that it was incredibly impressive that I figured this out. They thought my idea was completely logical, and most likely the correct diagnosis. Two of them suggested that I should seriously consider going into medicine because I have a unique perspective (of experience, largely) combined with a really great puzzle solving ability and could contribute a lot to the field.

I’m taking all of this in right now. I’ve been looking into getting back into the work force when/if I get better. I thought I was going to take up a career in yarn craft, and maybe it might still be a serious hobby, but after the experience I just had and the repeated suggestion that I should go into medicine, I have to rethink my feelings on the matter. I don’t believe in predestination, but I do believe that sometimes things happen that really shape your life, that suggest where you should be heading. I do have a unique opportunity here to do something big. At the same time, the idea is really scary to me. It just seems too big, and I wonder if I can really do it. I just don’t know. What I do know is that I have to focus on getting better first. It might take a long time.

I have a lot to think about.

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4 thoughts on “All the Little Pieces

  1. I’m so sorry about everything you’ve been going through! But I’m glad you’re starting to get some answers. I’m so incredibly pissed off for you about the way your endocrinologist’s office treated you. Why won’t doctors communicate directly with their patients? It makes no sense to me! Anyway, sending big hugs and lots of love your way!

    • Well, the problem is that the doctors have too high of a case load. They don’t have time to see all their patients and answer questions from a patient who doesn’t need an appointment. They also don’t have time to research unusual cases. All I know is that if I were a doctor and someone came in with an unusual case, I’d be compelled to solve the problem. I can’t help myself – I need to know. It seems most doctors are content to just not know, assume something is idiopathic, and move on. Or even worse – assume it’s someone else’s problem.

    • I plan to send the endocrinologist a letter in which I explain the consequences of their system. I want them to understand that a patient was put at risk of death because of it. If I have to suffer like this, it has to mean something or I can’t go on living. I need to use my experience to change how the system works.

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