I Just Know

I went to Dr F (the cardiologist) again today. I completed all the tests he ordered except the tilt-table test to check for POTS. I bought books on interpreting EKGs, I read articles on how to interpret what I read on my echocardiogram… I really worked hard on understanding what was going on with my heart. From what I saw, I was sure that I was right about the heart problem. I figured the doctor would say that there were some abnormalities and maybe he just wanted to wait and see. I didn’t think he’d jump all over a diagnosis of diastolic dysfunction, but I thought the tests might raise some suspicions.

I was wrong.

Not about the heart problem – I was wrong about the doctor seeing it. He cheerfully informed me that I had had wonderful test results, and that his other patients would “literally” (I hate when someone says literally when they mean figuratively) die to have my echo results. I was shocked into silence.

I have always worried that I know just enough to get me into trouble. I am under no illusion that I am a doctor. I am open to the idea that I just don’t know how to read the results of these tests. Despite all of that, I have a gut feeling that just this once I’ve gotten it right, but I can’t make the doctor see it.

Before making my case, I’d like to point you to a TED talk by Abraham Verghese.

Dr Verghese makes so many wonderful points, but for the purpose of my argument, I want to focus on his point regarding testing. He states (half-jokingly) that if someone came into his hospital missing a limb, no one would believe it until they get a CAT scan, MRI or orthopedic consult.

I came to my current cardiologist six weeks ago with my recent revelation that I have a problem with my heart. I had barely gotten started making my case when he interrupted, telling me that I was too young to have heart disease, and then he started referring me to all sorts of other specialists. We were interrupted so many times that I was unable to describe the main symptoms that make me think I have a heart problem. I managed to ask Dr F if he had heard of the work of Dr Paul Cheney (he had not). I managed to tell him that my blood pressure is too low, and my heart races. I tried to tell him that my thyroid medication is what makes my heart race, and that when my heart races I can’t breathe. I repeatedly coughed and gasped for breath during this appointment.

A few weeks later I got a written summary of the visit. He repeatedly called me “delightful” throughout the report. He noted that I had a strong family history of heart disease at an early age. He noted my diganoses of Hashimoto’s disease, allergy to gluten, PCOS, hypoglycemia, CFS/ME, and dysesthesia (a fancy word for numbness) of the face. Nowhere in this report did he mention the cough or gasping for air.

Since I saw Dr F the first time, I backed off and eventually stopped taking all of my thyroid medication. The cough and tachycardia all but disappeared (if I had caffeine or stood up too quickly or for too long, the tachycardia returned with the cough on it’s heels). As I am reintroducing the medication at a lower dose, the symptoms are coming back. Definite causal relationship there.

Today, when I came back to Dr F and he gave his pronouncement that I was healthy on paper, Michael and I were prepared to challenge his thought process. We had concerns about the Holter Monitor report.

“You only had two heartbeats that were irregular, but that is totally normal,” said Dr F. I completely agreed with this point.

“But how do you explain the tachycardia, so often during the day,” Michael asked.

“Well, the average heart rate is 88, which is a little high, but nothing to worry about. Exercise will fix that. Besides, heart rate can vary depending on your activity level.” Has he missed the point I made last time about how I pay inordinately for a small amount of exercise?

“But Barbara is sedentary, and her heart rate got up to 172… how do you explain that?”

“Well, it depends on sensory input. For example, if you’re watching a scary movie, it can make the heart rate increase.”

“What if that doesn’t apply?”

“It’s nothing to be concerned about.”

“But how do you explain the fact that Barbara’s cough correlates with the tachycardia?”

“I don’t know.”

I then brought up my concerns about the findings on the echocardiogram.

“I noticed that my ejection fraction was 75%, and the report calls my heart hyperdynamic.” I learned from Dr Cheney’s lecture that the heart can compensate in the systolic phase for a lack of diastolic filling by simply pumping more of the total volume out with each stroke.

“That’s not a problem,” replied Dr F.

“Well, I also noticed that my E/A ratio was 1.79. I understand that the normal range is 1.0 -1.5. Isn’t this a concern?”

“You’re the first patient I’ve ever had ask about the E/A ratio. This ratio varies with age, and in young people it can be over 2 and they don’t have any problems. Really, it’s no big deal. Listen, be careful about looking at these numbers in isolation. When I was in med school, we did echos on each other and by the time we were done we were all convinced that we had serious heart problems. The next day when we came back, we learned how to interpret the results and they turned out to be nothing. We were all fine.”

I didn’t even bother to mention my concerns about the end-diastolic and end-systolic volumes being below the normal range. He’d just try to tell me they are also of no concern.

I later thought about Dr F’s comments on the echos done in med school. These tests were performed on people who had no symptoms. Sure, in the absence of symptoms, abnormal findings can be benign. I think, though, in the presence of symptoms, they should be taken much more seriously.

I feel this illustrates the point Dr Verghese made in his talk. I have symptoms of heart failure – a cough that occurs when my heart rate rises, when I lie down, and when I exert myself. I had chest pain that another cardiologist called angina. My resting heart rate is way too high on occasion, and even on average it’s a bit too high (my book on interpreting EKGs says that sinus tachycardia, the kind I have, should never be ignored because it’s often the first sign of left-sided, or diastolic heart failure). The doctor has dismissed these signs and symptoms in favor of tests that show some results that are not severe enough to mean I am in serious trouble, but they are nonetheless abnormal. I think this doctor is missing an obvious diagnosis because he is more concerned about the patient in the computer than the one right in front of him.

I never thought I was in imminent danger of having a heart attack, but I do think there is just enough dysfunction in my heart to be causing the symptoms that are currently wrecking my life. All I ever wanted from this guy was recognition that this is so. I’ve done my homework – I know that it can’t be cured, only managed. I’m fine with that. But to deny there is a problem at all, this is a mistake.

I am hesitant to second guess a professional, especially a doctor. I know, however, that doctors aren’t always right. I had a broken ACL when I was in high school. The orthopedic surgeon did an MRI and tested the range of motion in my knee, but he did not feel that my ACL was actually broken. In the end he agreed to do exploratory surgery, and if the ACL was indeed broken, he’d repair it. When I woke up in the recovery room, he informed me that, wouldn’t you know it, the ACL was torn and needed to be repaired. I simply said, “I told you so.” And just like with my ACL, I’m certain my heart is broken. I just know.

Fight for Life

<sigh>

I have accepted that life isn’t fair. I try not to whine about that, but instead do what I can to change the things I have control over. That’s why I’ve pursued the ultimate cause of what was making me sick – I’m not content to just lie about and accept a life of nothing. I’ll tell you, though, life is trying to take me down.

I’ve gotten some of the test results back, including all of the heart-specific tests. I’m now certain there is something wrong with my heart, and I desperately fear that the cardiologist (Dr F) will try to tell me that it either isn’ t really a problem or that it isn’t serious. The Holter monitor, which records every heart beat for 24-hours, showed that my heart beats at a rate over 100 beats per minute for most of the day and night. I can only sleep when my heart slows down enough, but even then I get woken up in the middle of the whole sleep thing when my heart rate rises. The comments on this test just pointed out that I have sustained sinus tachycardia with sinus arrhythmias (which Dr F said aren’t “real” arrhythmias). From what I’ve read this can be very dangerous.

Yesterday I got the echocardiogram data – both the resting echo and the stress echo. The report with the stress echo said that there was nothing they could find wrong with my heart, but they did at least note that my blood pressure was really low and didn’t get all that high, even when they got my heart rate up to over 180. They also noted that my resting heart rate was in the 120s. The regular echo report was more distressing to me. I think that maybe the tech who wrote the report was just trying to write what she saw without judging it, but it looked like she was saying there was nothing wrong. She noted mitral regurgitation and the machine noted tricuspid regurgitation (basically, the blood flows the wrong way through the heart, either because the valves are messed up or there is some other sort of blockage). She used the word “trace” to describe it, which makes me think that she’s saying “no big deal”. The only thing she noted that was really abnormal is that my heart is hyperdynamic with an ejection fraction (what percentage of the blood in your ventricle is pumped out with each stroke) over 75%. This is a measurement that Dr Cheney said is suggestive of left ventricular dysfunction, the idea being that the atria are working harder to compensate for the lack of filling in the ventricles. I found this chart on a website with American Heart Association articles. The illustration at the top right shows how the ratio of E-waves/A-waves indicates degrees of left ventricular dysfunction, and the measurement I had showed the my E/A ratio is 1.79. That puts me over the threshold for severe dysfunction. That means I am at risk for diastolic heart failure. I know that I have this kind of heart failure right now. Heart failure doesn’t mean you’ve had a heart attack, it just means that the heart isn’t working appropriately, failing to deliver the blood supply your body needs. What usually happens is the blood that can’t get pumped through the heart backs up into the lungs, raising blood pressure in the lungs to the point where blood leaks out and interferes with breathing. Anyone who has spent time with me recently can tell you that I have a persistent cough, which indicates the heart failure. The treatment for this kind of dysfunction depends on the reason you have it, but I don’t have any of the common causes for diastolic dysfunction (hypertension, coronary artery disease, atrial fibrillation, or diabetes). Dr Cheney said that the kind of diastolic dysfunction experienced by those of us with ME cannot be cured right now (it’s a metabolic disorder), so all we can do is support the compensatory mechanisms. The worst part of this whole thing is that once someone has exhibited signs of heart failure, prognosis is poor.

So, all right, bad news, but at least I have Dr B, who has always believed me, puts in the work to understand my condition, and can help support the compensatory mechanisms, right? Well, life just kicked me while I’m down. Due to forces beyond his or my control, Dr B is moving. Out of state. Soon. I’m going to remain a patient at his practice when he moves, but it will not be the same as having a doctor right here who can do something right away. I will have to travel to Minnesota to see him in person (which I think is important, so I’ll be doing that a few times a year). I told my Nurse Practitioner, C, about the situation, and she’s willing to step in where she can, but I get the impression from her that my condition is over her head. I appreciate when someone can admit this, but it makes life even harder for me, as if it wasn’t enough of a struggle. It took me 30 years to find a doctor who recognized that the way I am sick is not normal, understands that I am intelligent and I have good ideas, and works with me and treats me how I want to be treated. I just don’t think I have another 30 years to try again. In short, this is devastating.

In Detail

I slept for fourteen hours last night, with a break in the middle to feed the cats. I think that should be enough to get my act together and explain to you the incredibly complex disease that I have. Don’t worry if you don’t understand it all on the first read-through – it’s so complex that I listened to a three-hour lecture on the subject twice. I’m going to try to give it in layman’s terms, but if I use a medical term (I’ve been using them so long now that I might forget what is accepted as common English), please ask me to define what you don’t understand.

First, I will explain Myalgic Encephalomyelitis (ME). The term ME is often used interchangeably with Chronic Fatigue Syndrome (CFS), but they aren’t exactly the same thing. I mentioned in a previous post that CFS isn’t really a diagnosis, but rather the medical community’s admission that there is something mysterious wrong with a patient. Well, ME is a defined disease process, with recognized symptoms and origins of those symptoms. I’ve recently learned that there is a movement within the ME community to get rid of the term CFS. The reason is that CFS can describe myriad diseases, from depression to heart disease and many other defined disease processes. There is a common belief that CFS is a somatization disorder, which means that it is first a mental problem that manifests with real physical symptoms. Well, if you are a heart disease patient with CFS, treating you for depression isn’t going to make you better and it ignores the physical problem. Conversely, if you have depression, treating you for heart disease isn’t going to help either. I think of it as diagnosing a patient with “runny nose.” Well, the runny nose is a symptom, not a disease, and it could be caused by an infection or allergies (or other things, I suppose), and these defined diseases have very different treatments. With these limitations in mind, I understand the ME community’s concern about the terms being used interchangeably. I see another side of the coin, though. Without seeing these terms used synonymously, I would never have learned what my real disease is. I think that it might be more accurate to describe CFS as a category of separate, chronic diseases that look similar to one another but have different causes. The most helpful thing for me would have been to see a website that listed diseases that can cause CFS. I could have investigated each one of them individually and arrived at my answer more quickly.

I found that other countries did a better job of defining ME than the United States does (CFS is a definition used by our Centers for Disease Control. I am not certain that the CDC recognizes ME as a separate disease). I found the Canadian definition of ME to be a very accurate description of the symptoms I had that don’t even seem to be related to one another. Here’s my summary of the case definition in plain language:

1. Expending energy, whether mental or physical, leaves the patient more exhausted than is reasonable for the level of energy expended. Also, other symptoms worsen when the patient has exceeded his energetic limits.
2. The patient has all sorts of sleep disorders, from insomnia to hypersomnia (sleeping a lot), inability to sleep for a full night, trouble falling asleep, etc.
3. Pain is present at the neurological level, in the muscles and in the joints. There may also be headaches of new types or intensity.
4. The patient has trouble when receiving too much neurological stimulation. It can make him sensitive to noise or light and it can make him oversensitive to emotional stimulation. Also, the patient may have trouble with memory, concentration, disorientation, etc.
5. The patient will have at least one of the following subset of symptoms: a) disorders of the autonomic nervous system such as dysregulated blood pressure, irritable bowel syndrome, bladder dysfunction, and heart rhythm irregularities; b) neuroendocrine symptoms (meaning the interaction of the nervous system with hormones) such as inability to tolerate heat or cold, abnormal appetite, weight change, hypoglycemia, and emotional instability; and c) immune symptoms such as swollen lymph nodes, sore throat, flu-like symptoms, change in allergies, and hypersensitivity to medications.
6. The symptoms must persist at least six months. (I will note that the disease can be suspected sooner, and it makes sense to start treating right away so more symptoms don’t develop and the damage doesn’t become permanent. If it goes away before six months is up, it wasn’t ME, but the patient was still treated. Better safe than sorry.)

There are a lot of symptoms here, and I have had them all. They seem unrelated unless you understand just how the whole disease process works. The website for the Myalgic Encephalomyelitits Society of America is the best place I’ve found for getting a complete understanding of the disease. I will give you my simplified version here, in layman’s terms (to the best of my ability). If you want to understand the disease more completely than I am explaining it here, I suggest you explore the entire website I listed above.

To understand the disease process in its entirety, you have to follow the work of Dr. Paul Cheney. There is a link on the ME Society website to a three-hour presentation done by Dr. Cheney thoroughly explaining what I am going to try to simplify here.

First, you have to understand how the heart works. Basically, the heart relaxes and fills with blood, then it contracts, pushing blood through the circulatory system. Contrary to what you might expect, it takes more energy for the heart to relax than to contract. Think of this as if you have metal spring. It takes energy to pull the spring straight, but when you release it, the spring returns to its coiled (contracted) state. This is what is relevant for understanding my condition, but it is not the whole story. For a complete description about how the heart and circulatory system work, you can read this website.

The root cause of the ME, at least in my particular condition, is cardiomyopathy (heart muscle weakness). In traditional cardiomyopathy, there are problems in the systolic phase, or the contraction phase (generally structural problems in the heart, and sometimes blockages), so the heart doesn’t pump enough blood to the body. I don’t have that kind of cardiomyopathy. My cardiomyopathy is in the diastolic, or relaxation phase of the heart beat (and what’s more, my body is compensating for this heart malfunction). Due to a mitochondrial malfunction (which I think is too complex to explain here, but if someone wants me to do so I will be happy to write another post about that), the heart doesn’t have enough energy to suck the blood that was just oxygenated by the lungs back into the left ventricle (which is why this is called left-sided heart failure). In my case, some of that blood backs up into my lungs, making me cough. When heart failure leads to fluid being left in inappropriate places in the body, this is called congestive heart failure. The doctors thought this was asthma when I first presented with this phenomenon, but I was clever enough to realize that was the wrong diagnosis almost a year ago. I think (but I haven’t heard anyone say this yet) that when you start having trouble with congestive heart failure, your body compensates by decreasing blood volume to stop that from happening.

So, I’ve established that I have the heart failure. The next question is, how does it cause the symptoms of ME? Above all else, the body preserves blood pressure. I’m going to steal Dr. Cheney’s metaphor about using a garden hose to water your plants to explain what is happening here. Say you have the faucet your hose is connected to turned all the way up. The water from the hose can reach all the way to the back of your garden. All is well. Let’s say someone comes behind you (without your knowledge) and turns the water pressure down halfway. Now you can’t water your entire garden. So what do you do? You put your thumb over the end of your hose to increase the water pressure, and you can water the plants in the back again, but it will take longer to get the same volume of water to them. Well, the body does something similar. When your heart (the faucet in the metaphor) can’t put out the proper blood pressure, the body has to compensate somehow. The first response is for the body to access your adrenal response. It raises your adrenaline levels, which speeds up the heart, increases blood pressure and opens airways. The problem with keeping that up forever is that eventually, your adrenals will fatigue. When adrenal fatigue happens, your body has to compensate by, effectively, putting its thumb over the ends of the blood vessels and reducing the supply of blood to organs in reverse order of their necessity for survival. When this happens, you get the defined process by which ME occurs:

1. Skin and thyroid function – when you get too warm, your body’s thermostat (we’re going to call this thermostat the central nervous system – CNS for short – but the reality is the hypothalamus recognizes actual temperature change. It’s just that in the end, all of this is about the central nervous system, and I’m trying to make this simpler) responds by sending blood to the skin to offload heat. What happens when you no longer have enough blood volume (above and beyond what is directly needed to keep your vital organs working) to offload enough heat? Either you die, or you downregulate your metabolism (heat is a byproduct of metabolism). The body does this by downregulating thyroid receptors, making you hypothyroid. For a while before this happens, though, you might have trouble maintaining a constant body temperature and may even have low-grade fevers.
2. Muscles – The next thing to get under-fueled is the muscles. I think that if the mitochondrial defect in the heart is not limited to the heart, you might also have muscular dysfunction because of the metabolism problem. However, if you aren’t getting circulation to your muscles, lots of bad things happen. The muscles aren’t getting the oxygen they need to function, so they switch to an anaerobic (without oxygen) method of making energy that produces lactic acid. That’s what makes your muscles burn after an intense workout. Eventually, your muscles will waste away and you will be in constant pain. I think this explains why I can’t hold a chiropractic adjustment – the muscles that hold my spine in place are just too weak to do their job, so I get out of alignment quickly.
3. The liver and gut – when your reduced cardiac output gets really advanced, you start having digestive problems. Have you ever noticed that, after you eat a large meal, you get exhausted? There’s a reason for that – in order to digest your food, your body has to send blood to your digestive tract to provide the fuel it needs to do the work of digestion. The bigger the meal, the more blood needed. What if you don’t have the blood to spare? Well, your gut then releases a chemical called VEGF which dilates the capillaries and blood vessels nearby to encourage greater blood flow. An unfortunate side effect of the open capillaries is called “leaky gut syndrome.” Leaky gut syndrome is when metabolic waste products and partially digested food get out of your intestines and into your blood stream. Chaos ensues (I will elaborate in the next step). In addition, your liver doesn’t get the blood it needs to function either. You may have a perfectly functional liver, but if it can’t get the blood it needs to do it’s job, it will fail to detoxify your blood making you feel sick.
4. The brain – I am with Dr. Cheney in believing that the effects of the brain are more related to the toxicity coming from the gut than lack of blood flow (although I do think that blood flow to the brain might be a problem as well). The toxins from your gut get into your nervous system and dysregulate it. You can no longer control your blood sugar, your blood pressure, your body temperature, or even your hormone production. You can’t think, you can’t form memories, you might have seizures… I honestly think this may be related to what causes migraines in some folks. I’d be willing to bet that migraine sufferers could do a liver cleanse, then subsequently avoid foods like gluten, eggs, dairy, soy and other highly allergenic ingredients and they would have a reduction in symptoms.
5. The heart – By the time your circulation defect is hitting your heart, I think you are in serious trouble. Look at all the previous systems that had to be deprived of fuel first – when you’ve gotten down to sacrificing the vital organ you need to keep yourself alive, that’s an act of desperation. The clue you’ve gotten to this point is that your heart will have an arrhythmia. You’ll even have chest pain that feels like a heart attack. If you go to the cardiologist, he’ll probably find that your mitral valve has prolapsed (it won’t close properly). At this point, your diastolic cardiomyopathy can turn into classic systolic cardiomyopathy.
6. The lungs and kidneys – This is the final event that precedes death. Your lungs and kidneys shut down and you get toxic and die. That simply.

Here’s the cool thing, though – ME prevents you from getting too far along in stage five. Somehow, the body figures out that it can just cut your energy production, forcing you to rest and cut your demand for the energy it doesn’t have. The reason it does this is even more complex, and something I will only explain in more detail in another post if someone requests it of me. The short version of the problem is that there are two byproducts of ATP production (energy production) that can combine and become quite lethal – Nitric Oxide and Super Oxide. When they combine, they become Peroxynitrite, a potent free radical. It forms in a nanosecond and kills something in a picosecond. If you have tons of these Peroxynitrite molecules in your heart and you can’t reduce them to water and carbon dioxide fast enough (or if your heart cells are deprived of oxygen for too long), you will have cardiac cell death, which is what defines a heart attack.

So, how did I get into this situation in the first place, having a heart defect on the mitochondrial level. Well, the short answer is, I’m not sure and it almost doesn’t matter. Almost. It seems to be a combination of exposure to viruses, bacteria, toxins, allergens, and heavy metals. I think my problem started with an infection, probably when I was a very small child. The viruses that have the greatest affinity for the heart are in the Herpes family. No, I don’t necessarily mean genital or oral herpes. Chicken Pox and Mono are also in the Herpes family. I think about the fact that I caught Chicken Pox twice as a kid. That suggests to me that I never really fought it off well. The thing about Herpes viruses is that they live in your body forever once you get them, going through active and quiescent (inactive) phases. One way you fight this virus is with an enzyme called RNase-L. It chops up messenger RNA (mRNA) from the virus, keeping it from replicating. Mistakes happen in the body, and at some point it appears that the RNase-L starts to think that human mRNA is viral mRNA, so it chops that up, too. Eventually you get transcription errors that lead to mitochondrial malfunction. The significance of this is that I have to be careful about what infections I get because each time I get sick, I seem to get worse permanently.

So, that’s what happened. Complex, isn’t it? The next step is to get an official diagnosis from a medical doctor, because that can open up a few doors for me under the Americans with Disabilities Act. As much as I adore Dr B and owe him my life at this point (I will discuss this further in another post), he is a chiropractic doctor and his support of my self-diagnosis means nothing to those who enforce laws that will allow me to do such things as attend medical school in a modified manner (not having to go to class to hear lectures, taking exams when I feel well enough, that sort of thing).

All right, I’m back up and fighting. Look for more posts in the future about subjects like the psycho-social impact of the disease, the medical establishment’s role in keeping me from getting a diagnosis, and other related subjects. Just be patient – I’m sick, and it might take some time.

The Answer

After a lifetime of being sick, and after a year of being so acutely sick I could no longer function, I finally know what went wrong. A few days after my last post, I made what I thought was going to be one final effort to find any information on my health condition before I gave in and decided that I would always be sick and that there was nothing more I could do to help myself. I had reached the end of my rope. I think it’s best to keep private what reaching the end of my rope looked like, but suffice it to say that it was really, really sad. It was then, when I gave up, that the answer finally came.

What I have is compensated idiopathic diastolic cardiomyopathy which lead to condition called myalgic encephalomyelitis. It’s a mouthful, but basically, it means that I have diastolic heart failure, and my body has compensated for it by turning down its production of energy to help me survive said heart failure. In future posts I will describe what’s happening a little more thoroughly, although not completely. It’s not that I don’t think you will understand, it’s just that it took me a year to do all the research required and I only barely understand what happened myself. Also, my condition is only mostly understood – there’s still research to be done in the medical field.

This is a good news/bad news diagnosis. The bad news is, there is no cure. Diastolic heart dysfunction has only recently been detected and understood, so not only do many cardiologists not know about the condition, but there is no research yet on treatment.  The good news is, my symptoms can be managed, and perhaps I can get to the point where I barely notice the symptoms. I may have to lead a limited life, but not so limited as I do now. As I start treating the condition, I should make slow improvement. The catch is, it can take a year or more to know if what I am doing is changing my disease status.

I am very tired now, and I need to get some rest so I can start taking the next steps toward my recovery. I promise that soon I will write a series of posts describing what the disease is in a more thorough manner, how I got to the diagnosis, and what the future will look like.

It feels good to finally have the answer!

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.