Coping With and Treating Fibromyalgia
online conference transcript

Dr. John Lowe, our guest, is a fibromyalgia, thyroid, and metabolism researcher. He's also a board certified pain management specialist. In his new book, The Metabolic Treatment of Fibromyalgia, Lowe maintains thyroid problems are behind the symptoms of fibromyalgia and his metabolic rehabilitation protocol provides significant relief.

David is the HealthyPlace.com moderator.

The people in green are audience members.

David: Good Evening. I'm David Roberts. I'm the moderator for tonight's conference. I want to welcome everyone to HealthyPlace.com. I want to let everyone know that we are looking for journalers in the Healthyplace.com Chronic Pain Community who keep online diaries of their experiences. If you are interested in doing that, please click here to sign up.

Our topic tonight is "Coping With and Treating Fibromyalgia". Our guest, Dr. John Lowe, is a fibromyalgia, thyroid, and metabolism researcher. He's also a board certified pain management specialist and a Chiropractic Physician.

In his new book, The Metabolic Treatment of Fibromyalgia, Dr. Lowe maintains, thyroid problems are behind the symptoms of fibromyalgia and his metabolic rehabilitation protocol provides significant relief. Dr. Lowe's website is: http://www.drlowe.com.

Good evening, Dr. Lowe, and welcome to HealthyPlace.com. Because our audience may have different levels of knowledge, can you start by defining what Fibromyalgia is?

Dr. Lowe: As we use the term today, fibromyalgia refers to a set of symptoms and signs that we use to designate the person as having fibromyalgia. We use the term to provide a patient with a diagnosis. But the term doesn't refer to any underlying disease process. To my research colleague, and me, the term refers to a subset of patients who have either hypothyroidism (a thyroid hormone deficiency) or cellular resistance to thyroid hormone.

One thing I would like to emphasize, is that different patients who have a thyroid hormone deficiency, or resistance to thyroid hormone, react in different ways. Some of the patients only have severe depression that is fairly resistant to most antidepressant medications. Other patients only have high cholesterol levels. And other patients mainly have fatigue or widespread aches and muscle pains.

Of course, most patients have a combination of symptoms. For example, most patients who have widespread pain and get the diagnosis of fibromyalgia also have some degree of chronic fatigue. Most also have some depression, poor memory and concentration. And they may have a host of other more minor symptoms.

Since most doctors today are incompetent at identifying patients who need thyroid hormone therapy, these different patients get different diagnoses, depending on their predominant symptom. They are given medications to control that particularly troublesome symptom. The underlying mechanism then, goes untreated. Most patients don't get much relief from the medications. The reason is, that the medications don't eliminate the underlying disorder---which is too little thyroid hormone regulation of one or more body tissues. So most patients' health problems are chronic, even though they are undergoing treatment for the worse of the symptoms.

David: Unrelenting muscle pain, depressive symptoms, interrupted sleep patterns are all part of the symptoms of Fibromyalgia. How does one contract Fibromyalgia?

Dr. Lowe: Generally, the symptoms develop in one of two ways. First, for most patients, the symptoms come on "insidiously,"---that is, the patient becomes aware at some point that he or she has been having symptoms off and on and of varying severity.

Other patients develop quite severe symptoms after some psychological or physical stress. For example, about one-third of fibromyalgia patients say their symptoms develop within a week to several weeks after a physical trauma such as a car wreck. Some doctors call this "post-traumatic" fibromyalgia. Because the symptoms can come on either gradually or suddenly, many researchers and doctors have been confused and believe the disease has different causes. Actually, the available scientific evidence shows us that the same underlying process, abnormally slow metabolism, is the single causative underlying process.

Other life events, however, can "precipitate" the appearance of symptoms of fibromyalgia. These "precipitating" events may appear to doctors and patients to be the actual cause of fibromyalgia. But this isn't true.

David: We have some audience questions, Dr. Lowe, regarding the Thyroid and Fibromyalgia:

olgrump: All of my thyroid tests come back in the normal range. What does this mean?

Dr. Lowe: It means that you may have normal thyroid function, which means that your pituitary gland and your thyroid gland are working normally in relation to one another. Or it could mean that the tests simply didn't detect your particular thyroid dysfunction. Since we never know which is the case when a patient has normal thyroid test results, the tests are largely meaningless. They are useful, for the most part, only when a patient has a rather extreme thyroid dysfunction.

Let me explain a little more, so that I, hopefully, make this point really clear. We've tested all incoming fibromyalgia patients for more than five years with extensive thyroid function tests. We've published our results two different times in journals. These are the results we found:

• When standard thyroid function tests identify from 10% to 13% of patients who have "primary hypothyroidism," this means that their thyroid glands are not producing enough thyroid hormone.

• When we use a dynamic test called the "TRH stimulation test," we identified another 44% of fibromyalgia patients whose results were consistent with "central" hypothyroidism. This term means that the patients have a thyroid hormone deficiency due to dysfunction of either their hypothalamus or pituitary gland. Their thyroid glands are normal, but the thyroid glands don't produce an optimal amount of thyroid hormone because the gland isn't properly regulated by the hypothalamus or pituitary gland.

In conventional medical practice, doctors no long use the TRH stimulation test. This means that the doctors fail to identify perhaps a form of hypothyroidism in some 44% of their fibromyalgia patients. These patients will have normal results on the standard thyroid tests, and their doctors tell them they have normal results. Therefore, the doctors tell them, your fibromyalgia symptoms can't possibly be related to a thyroid problem.

This circumstance of doctors not identifying patients who have too little thyroid hormone regulation goes further. It leads us into the field of thyroid hormone resistance, which I'm sure we'll get into. Just let me say that we've found that patients who don't have primary or central hypothyroidism, most have thyroid hormone resistance. We know this without doubt because we have laboratory proof. When the hypothyroid and thyroid hormone resistance patients undergo "proper" metabolic treatment, most patients markedly improve or completely recover.

David: I want to talk about the metabolic treatment for Fibromyalgia a bit more in a few minutes. But first, here's another question:

sunny157: So, should we tell our doctor to do the TRH stimulation test?

Dr. Lowe: If your standard thyroid test results are normal, then yes, you should request the additional test.

Coie: I have been on thyroid replacement hormone for over twenty-five years, but have been diagnosed and undiagnosed with fibromyalgia and still have severe symptoms. Is there a difference in the type of thyroid replacement hormone as far as effectiveness?

Dr. Lowe: Yes. In general, most patients' doctors prescribe a form of T4, usually the brand Synthroid. We used this form of hormone for many years and have extensive experience with it. Because of this, we know it is the least effective form to use. We don't use it anymore at all. Nowadays, we use either desiccated thyroid (the brand Armour) or plain T3.

David: One of the questions I'm getting is that it's difficult for the patient to convince their doctor to do these additional tests. "After all, they are the doctor and they know what's best." How would you suggest a patient handle that?

Dr. Lowe: First, I would advise all patients to always keep in the forefronts of their minds that they, the patients, are in charge. If a doctor won't provide you with satisfactory results, fire him or her and find another doctor who will. Part of the problem, of course, is managed care. Many patients feel that their managed care doctors won't give them enough time and won't order tests when they are appropriate. I could explain this in depth, but let me just say that managed care doctors have their hands tied by the insurance companies that essentially employ them. You may have to find a doctor outside that system to get the tests you need. But never forget---the doctor definitely is NOT always right.

David: Here are a few audience comments on what's been said so far. I'll post those and then we'll continue:

claimsrep: That's not so easy, Dr. Lowe. Too many doctors don't take new patients. It would be absolutely WONDERFUL to feel good again.

scatha61: Try convincing a doctor of that!

Dr. Lowe: We've found that the most cooperative doctors are usually:

1. family physicians
2. holistic, nutritionally-oriented doctors
3. naturopathic physicians
4. and physical medicine rehab doctors.

This doesn't mean that each and every one of these doctors are going to be cooperative. Some will treat you poorly. But your best chances for finding a cooperative doctor is among these groups. You may have to doctor shop, which is something I encourage patients to do.

I know many doctors who work within the managed care system. Some of them are heartbroken that they can no longer practice good medicine. Some have told me that they can't even take the time to say hello to a patient. Their fees have been reduced so much by managed care that they have to see three or four times the number of patients they did five years ago.

David: There are also still many doctors out there who believe Fibromyalgia is all in the patient's head. Here's an article on that subject.

sharynfeeney: Dr. Lowe, I have had RSD (reflex sympathetic dystrophy) for nineteen years. My thyroid function tests came in the low range of normal. My cholesterol levels were high and the triglycerides were 549. What is your suggestion? I have also had problems with hypoglycemia.

Dr. Lowe: I would suggest that you have a TRH stimulation test in addition to the standard thyroid tests. But keep in mind that too little thyroid hormone regulation is not the only cause of the symptoms you describe. In fact, I've never seen a patient whose RSD was due to too little thyroid hormone regulation. One of the best physicians in the country who treat RSD is a Dr. David Flemming, a pain management anesthesiologist. Your high cholesterol, triglycerides, and hypoglycemia could very well result from too little thyroid hormone regulation. But there can be other causes.

Here are my suggestions for what to do. If your standard thyroid test results are normal, and your TRH stimulation test result is normal, find a holistic, nutritionally oriented physician or a naturopathic physician who will give you a trial of thyroid hormone therapy despite the test results. If you have thyroid hormone resistance, none of the lab tests will identify it. You'll only know if you benefit from the use of thyroid hormone.

David: Dr. Lowe, earlier you mentioned your metabolic treatment protocol and said it provides significant relief for the Fibromyalgia symptoms. Please explain that?

Dr. Lowe: What we do in metabolic rehabilitation is correct anything that may be causing the patient's metabolism to be abnormally slow. Too little thyroid hormone is not the sole and only answer for most patients. Most patients have a disease-encouraging diet. The diet typically encourages blood sugar problems, and of course, this can cause metabolism to be too slow.

Most patients also have multiple nutritional deficiencies. When some of the vitamins are deficient, such as folic acid, this can severely slow metabolism. It can also leave the patient cold, intolerant, depressed and discouraged. The patient typically has poor sleep, and the poor sleep amplifies all the symptoms.

So, we make sure our patients have enough of a wide array of vitamins, minerals, and trace elements. Some patients are using medications that slow metabolism. One of the most common is beta-blockers that some patients take as a treatment for high blood pressure. Metabolic rehabilitation is comprehensive in that we take care of any such metabolism-slowing factors. And, in addition, if the patient has hypothyroidism or thyroid hormone resistance, we properly treat this at the same time.

David: How successful is this regimen in reducing Fibromyalgia symptoms?

Dr. Lowe: Around 75% of our patients completely recover. By this, I mean that they no longer meet the diagnostic criteria for fibromyalgia. The patients resume normal lives. Among the 25% who don't recover are several subgroups of patients. One group of patients is using narcotic medications when they come to us. We've recently concluded that we probably won't take any more patients who are currently using narcotics because we can predict that the outcome will be poor. In fact, narcotic use is the single most common factor in treatment failure. I'd like to say that we don't make judgments of patients using narcotics. We understand that some patients' suffering has been so severe that they've had no other option.

liseanne22: What is considered nutritional deficiencies? Because I do take supplements such as folic acid, St. John's Wort, and magnesium that help me a lot, except for my sleep.

Dr. Lowe: There are different ways to define the term "nutritional deficiency." One definition says that it is a severe enough inadequacy of a particular nutrient that the chemical pathways that depend on it become dysfunctional. As a result, physiological processes go awry, and the patients develops symptoms. I hope you're taking a wide array of nutritional supplements, rather than just folic acid.

claimsrep: Do I have to come to your clinic to be treated, or would my doctor be able to handle this?

Dr. Lowe: Since the publication of my book on the metabolic treatment of fibromyalgia, other doctors can read about our protocol and use it with patients. Quite a few physicians around the country are now using our protocol. We refer patients to those doctors when we can. So, no, you don't have to come to us.

Sunshine613: My twenty-three year old daughter has Graves' Disease. Does this mean she could get fibromyalgia too?

Dr. Lowe: Yes, it does. Graves' Disease, of course, is an autoimmune disease in which the patient has too much thyroid hormone. Most Graves' patients undergo treatment that leaves them with hypothyroidism. Since fibromyalgia is mainly the result of too little thyroid hormone regulation of tissues, some Graves' patients, when they become hypothyroid, have fibromyalgia.

Most likely, your daughter will be given Synthroid after she becomes hypothyroid. This medication, as I said before, is the least effective form. Many patients have fibromyalgia while they're taking Synthroid, and when they're switched to Armour or plain T3, and the dosage is high enough, the "fibromyalgia" goes away. I should add that their fibromyalgia goes away if they don't have nutritional deficiencies, too little physical activity, and aren't taking metabolism-impeding drugs.

weaverwoman: Is fibromyalgia hereditary?

maryalice: My mother has Graves' disease, is this a hereditary condition and a possible reason I got fibromyalgia?

Dr. Lowe: There is a familial tendency, but keep in mind that fibromyalgia results from too little thyroid hormone regulation. It wouldn't result from the excess thyroid hormones in Graves' but the deficiency of thyroid hormone afterward. You may have hypothyroidism due to another mechanism, if you didn't go through Graves'.

Corina: Do you have a list of doctors that are helpful in different cities, or can anyone point me to such a list. I am not finding help in many respects.

Dr. Lowe: We don't have a list posted right now. If you want, you can send an e-mail to AskDrLowe@aol.com and let us know where you are. We'll let you know of anyone in your area. Incidentally, I'd like to mention that at Mary Shomon's thyroid website, she has a "Top Doc" section. You may be able to find a good doctor in the list there. The doctors' names and addresses are posted by patients who have had good experiences and who recommend the doctors. By the way, I recommend Mary Shomon's site for anyone who has a thyroid problem. Also, her new book titled "Living Well With Hypothyroidism" is the best on the market.

scatha61: I've been told I have fibro-myositis. Inflammation in the connective tissue. It is especially located in my ribs. What's the difference?

Dr. Lowe: "Fibro-myositis" means chronic inflammation of muscle and its connective tissues.

In fibromyalgia, patients don't have inflamed muscles even though they have widespread muscle pain. Early in the twentieth century, a research study found some inflammatory material in some patients tissues, and as a result, what we now call fibromyalgia was then called "fibrositis." Fibrositis meant inflammation of the connective tissues around muscle cells.

But modern studies have confirmed that fibromyalgia doesn't involve inflammation. Some popular medical writers, Andrew Weil in particular, have perpetuated the myth that fibromyalgia patients have inflamed muscles. He recommends some herbs that have anti-inflammatory effects. But these won't benefit fibromyalgia patients, because they don't have inflamed muscles.

claimsrep: If it turns out there's nothing wrong with your thyroid and you take this thyroid hormone, will it do any harm to a healthy thyroid?

Dr. Lowe: No. That was something I was concerned about long ago. But when I researched the thyroid literature, I found that the answer is no. As the renowned medical physiologist Arthur Guyton told me years ago, even if a patient has been on thyroid hormone medication for a long time, say twenty years, and you take him or her off it, the thyroid gland in virtually all patients will resume the activity it was capable of, before the patient began taking thyroid hormone.

David: I know it's getting late. Thank you, Dr. Lowe, for being our guest tonight and sharing your knowledge and expertise with us. And I want to thank everyone in the audience for coming and participating tonight. I hope you found it helpful.

We are just starting to build our Fibromyalgia, Chronic Pain community here at HealthyPlace.com, so I hope everyone will come by again and often. Also, we now have hosted support groups on our site. We have many different support groups. We are receiving a lot of very positive feedback. You can click this link for more details and the schedule.

Dr. Lowe: Thank you for letting me spend time communicating with the visitors. I wish you all the very best of health.

David: Thank you again, Dr. Lowe, and good night everyone.

Disclaimer: We are not recommending or endorsing any of the suggestions of our guest. In fact, we strongly encourage you to talk over any therapies, remedies or suggestions with your doctor BEFORE you implement them or make any changes in your treatment.

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