www.drlowe.com--Diagnosis of Thyroid Related Problems--Fibromyalgia, Hypothyroidism, Thyroid Hormone Resistance

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The Metabolic Treatment
of Fibromyalgia
by Dr. John C. Lowe
Readers' Comments

Diagnosis of Thyroid-Related Problems
[Q&As are placed in reverse chronological order. In other words,
the latest Q&As come first. Earlier ones are further down the page.]

Latest Updates to drlowe.com

October 17, 2004

Question: I have heard that your treatment has "cured" a local lady here in Phoenix. I have fibro but my thyroid is fine. Do you have a treatment for me?

Dr. Lowe: You are correct: there is a former patient in Phoenix who recovered years ago under our care. We also have many other recovered patients scattered across the US, Canada, and some countries in Europe.

Available studies suggest that some 10% of patients with a diagnosis of "fibromyalgia" don't have evidence of thyroid disease. (Dr. Gina Honeyman-Lowe and I summarized the studies in France several years ago.) Instead, one or more other factors slow their metabolism too much. Of these other factors, the most common are an unwholesome diet, nutritional deficiencies, low physical fitness, and metabolism-slowing drugs. The patients’ abnormally slow metabolism is the mechanism of their fibromyalgia symptoms. We treat these patients as well as those who have thyroid problems.

However, many patients whose doctors tell them they don't have thyroid problems actually do. The thyroid lab tests doctors most commonly order are the TSH, free T4, and free T3. These tests don't reliably identify patients with hypothyroidism. Moreover, the tests identify no patients who have thyroid hormone resistance.

We're able to identify these patients by measuring their resting metabolic rates, using other tests that point to thyroid hormone deficiency or resistance, examining the patients for physical signs, and testing them with trials of thyroid hormone therapy. Through this protocol, we’ve proven that many patients whose doctors told them they didn't have thyroid problems actually did. And part of the proof, of course, is that the patients have recovered from their so-called "fibromyalgia" symptoms.

February 9, 2004

Question: I read on your web site that you’ll order thyroid antibody tests for patients anywhere in United States. If this is true, I need your help.

I’ve tried to get my doctor to order tests for thyroglobulin & thyroid peroxidase antibodies, but he’s refused to cooperate. I told him that a study you mention on your website has given me hope. For many years, I’ve suffered from hypothyroid symptoms, but mainly chronic pain over most of my body. My TSH and thyroid hormone levels have always been normal, and because of that, I got a diagnosis of fibromyalgia.

When I read your description of the study on drlowe.com, I got excited, but my doctor quickly squelched the excitement. I told him the study showed that thousands of people were tested, and a high percentage who had normal TSH levels but high antibodies also had chronic, widespread pain. He said that’s nonsense and that I don’t need antibody tests. He told me he should keep switching my pain killer and antidepressant prescriptions until he finds ones that relieve my symptoms. His approach hasn’t helped me after several years, so I’ve decided to reach out elsewhere until I find a doctor who’ll order the antibody tests. I’ll appreciate any help you give me in arranging for them.

Dr. Lowe: I'm sorry your doctor won’t cooperate with you and order the antibody tests. In recent years, we’ve heard steadily more patients complain that their doctors refuse to order lab tests that the patients have good reasons for requesting. Understandably, many of the patients are exasperated. We order lab tests long distance for many of them.

Phone us at 303-413-6003 and we’ll arrange for the tests. I suggest that I have a brief phone consultation with you before we order the tests, and another consultation when we get the results. By talking with you, I can recommend other tests if they seem appropriate for you. I can also make sure you get an accurate interpretation of the test results.

It will also be helpful if you’ll send us a copy of your latest TSH and thyroid hormone levels. We’ll check to see if your doctor incorrectly interpreted the results, as often happens. It’s also important that we see your thyroid test results for another reason. The upper level for a "normal" TSH was recently lowered. Despite this, most labs in the US still have the former, higher level on their reports of TSH levels. Reports from these labs fail to flag TSH levels that, according to the revised upper level, we now consider high. If your level is high by the newer cutoff point, and you turn out to have high antibody levels, your diagnosis will be primary hypothyroidism secondary to autoimmune thyroiditis. With this diagnosis, you’ll stand a better chance of a reasonable doctor prescribing thyroid hormone for you.

Congratulations on taking control of your own health care decisions. You’ve joined a swelling legion of patients who’ve turned away from dictatorial doctors and, as a result, stand a far better chance of recovering their health.

January 1, 2004

Question: For over a year now, I’ve had 85% of the symptoms in your hypothyroid symptoms list. I have several intense symptoms. I have memory problems, and my hair and skin are dry. My feet are extremely dry and cracked. My hands and feet are numb, and my legs and back ache most of the time. My body temperature is low (usually 97.3), and my hands and feet are cold. My eyes are puffy in the morning, and my menstrual flow is heavy and prolonged.

Last month, at my request, my doctor did a TSH (1.37), T4 (0.85), and antibody (<0.5) test. He said all the results were normal.

Three weeks ago I developed pain in the front of my neck and a choking sensation when I lie on my back at night. The pain is on the right side of my esophagus and penetrates into my right jaw and ear. I see my doctor again tomorrow for the pain. I’m really scared that something serious is going on, although my thyroid blood tests are normal. Can you tell me if there’s any other test I should ask him to do? Should I be concerned that this could be my thyroid? Is there anything else it could be?

I know you are very busy, so thank you for your time. By the way, I think it’s a great service that you offer, answering questions for free, especially since many people have lost all faith in their doctors and the world of medicine.

Dr. Lowe: Thanks for your kind comment about our answering emails. This educational section of our website, of course, is a cooperative venture between those of us at drlowe.com and patients such as you who submit questions to us. So in turn, I extend my thanks to all of you.

Your neck pain and choking sensation raise the possibility that your thyroid gland is enlarged (goitrous). Swelling of the gland is usually accompanied by an elevated TSH level. Of course, on the day your doctor measured your TSH level, it was within the reference range. Your level, however, may be "normal" one day, but high the next. The endocrinology specialty, of course, discourages recognition of such variations in the TSH level; the TSH test, implies the specialty, is as reliable as the rising of the sun each day. But despite this, TSH levels vary. For example, in The Metabolic Treatment of Fibromyalgia, I describe a 1997 study by Kraus and his colleagues. In the study, they found no correlation of TSH levels from week to week. (The low correlation they found, r=0.17, was not statistically significant.)[1] This means that we can’t accurately predict what a patient’s TSH level will be next week based on her level this week.

Because you have neck pain and a choking sensation, your doctor should palpate your neck for thyroid gland nodules or swelling. If he suspects he feels a nodule, he should order an ultrasound scan of the gland. If he doesn’t feel a nodule, or if he feels a diffuse swelling, he should order a sed rate and c-reactive protein. These are tests for inflammation; if either of the tests is positive, your thyroid gland may be swollen from inflammation. Your symptoms, then, might be caused by hypothyroidism due to inflammatory thyroiditis.

You gave only one test result for antithyroid antibodies. We measure two types of antibodies: those against thyroglobulin and thyroid peroxidase. In some patients, the level of one type of antibody is high but not the other. Hence, measuring only one level and finding a normal value can leave a patient with undiagnosed autoimmune thyroiditis. I encourage you to have your doctor measure both. If he won’t, I'll be happy to order the tests for you. Just phone the clinic at 303-413-6003 and we'll help you make arrangements.

Another possible cause of your neck symptoms is an esophageal spasm induced by anxiety. This is fairly common, especially in the patient left with doubts and distress from her doctor’s failure to find the cause of her symptoms. If the appropriate thyroid-related tests don’t point to a thyroid disorder, you should ask your doctor to evaluate you for a possible esophageal spasm.

December 28, 2001

Question: On our thyroid-information web site, I have many people come to me who have low levels of both TSH and T4. I need clarification about what this means. From studies I’ve read, I understand that both hormones being low could mean a problem with the pituitary. But I also know of a lady whose doctor wrote in her notes, "TSH blocking." I've looked this up in a book which says, ". . . antibodies which block the TSH receptors on the surface of the thyroid cells. If these receptors are blocked, the TSH produced by the pituitary cannot stimulate thyroid hormone production." Is this the "TSH blocking" the doctor referred to? And if so, does this mean that if a doctor sees low levels of both TSH and T4, he should think about doing antibody testing?

Dr. Lowe: The doctor probably was referring to antibodies blocking TSH from binding to TSH-receptors on the thyroid gland. But when a doctor sees both a low TSH and low T4, testing for these antibodies is not ordinarily the proper procedure. The reason is that when the antibodies are active in a patient, her TSH level is likely to be low, but her T4 level is likely to be high. Let me explain.

Blocking of TSH from binding to TSH-receptors on the thyroid gland is caused by immunoglobulin G antibodies. These antibodies result from a defective gene involved in immune system regulation. Because these antibodies stimulate the thyroid gland, they’re called "thyroid-stimulating antibodies." Most Grave’s disease patients have high titers of the antibodies.

The typical patient with a high titer of the antibodies has a low TSH level, but her thyroid hormone level is high. The antibodies have a longer-lived stimulating effect on the thyroid gland than does TSH. The more prolonged stimulation usually causes the gland to enlarge. We call the enlargement "hyperplastic goiter." From the enlargement, the gland produces and releases an excess of thyroid hormone. The thyroid hormone level in the blood then rises, exposing tissues to an excess of thyroid hormone. The excess overstimulates the tissues, causing the syndrome we call "thyrotoxicosis."

The high level of thyroid hormone in the blood also inhibits the pituitary gland’s release of TSH. The inhibited release lowers the blood's TSH level. When a patient’s thyroid gland is affected by the antibodies, then, she usually has a low TSH level and a high T4 level. It is this pattern (rather than a low TSH and low T4) that should prompt a doctor to order a thyroid-stimulating antibody test.

When both TSH and T4 levels are low, my first thought is whether these levels are reliable. To learn whether the levels are reliable, a doctor can order the tests several times during the same day, and possibly on different days. I recommend this because TSH and T4 levels fluctuate during the same day and on different days. If we measure the levels only once and find them both low, this may merely reflect a simultaneous low point in their fluctuating daily levels. Concluding from the low levels that the patient has impaired pituitary release of TSH might be a diagnostic error. To confirm whether a patient has impaired pituitary release of TSH, we order a TRH-stimulation test. If during this test, the pituitary releases less than a normal amount of TSH, the appropriate diagnosis may be "pituitary hypothyroidism."

September 7, 2000

Question: Several alternative doctors on the Internet are now saying that the free T3 is the ultimate thyroid test to use in adjusting our dose of thyroid hormone. Do we finally have a blood test that matters?

(For purposes of courtesy, we've deleted the names of the alternative doctors the writer mentioned.)

Dr. Lowe: No, we don't finally have a blood test that matters—not unless a doctor's goal is to treat another lab value rather than his patients. I recently communicated with one of the doctors your mentioned. He had copied to me an e-mail he'd written to another physician. In his e-mail, he boldly advocated adjusting thyroid hormone dosage according to the free T3. He also stated that he wasn't going to attend the upcoming Broda Barnes Foundation meeting. His reason was, "Although I retroactively recognize his genius for his times, the latest FREE-levels of the T4 and T3 hormones—if one uses them properly and regularly—make his methods obsolete." I've included below my reply to the doctor. The content of my reply explains why I disagree with him that the free T3 is the ultimate method of adjusting thyroid hormone dosage. I wrote to him:

"I'm confident you're getting clinical results superior to those other physicians get by using the TSH level and Synthroid. But I'm confident that you're not getting results superior to those we achieve by adjusting patients' thyroid hormone dosages by the responses of their tissues particular hormone dosages.

" My understanding is that those who work under the banner of "doing Broda Barnes work" have expanded the measures by which they assess therapeutic change and to adjust patients' dosages. These doctors now use other measures along with the basal body temperature. I don't know, however, what their clinical tract record. I don't know because hardly any one in "the movement" (away from conventional clinical thyroidology), except for my research group conducts clinical trails to assess the effectiveness their methods of adjusting dosage. Without experimental assessments of the different methods, we really can't accurately judge which is truly most effective.

"Nonetheless, I'm confident that your results are usually good from using free T3 and T4 levels. And reaching an priori conclusion that your method is most effective is certainly a first step in scientific thinking. Bold hypothesizing is essential advanced sciences. But it is of little use scientifically unless we following hypothesizing with rigorous attempts to disprove our own hypotheses. My research group has taken this scientific approach. This is why we know objectively that our method is highly effective. But without studies that compare our method of dosage adjustment with those such as yours, we can't dogmatically pronounce that ours is superior to them—nor can the advocates of these other methods, such as yours. I suspect, however, that you and I will agree that your method and ours is superior to that of using the TSH and Synthroid.

"My concern is that you won't follow your bold hypothesizing by the next essential step in good science—stringent efforts to logically or experimentally disprove your own hypothesis. If not, you'll be making the same mistake as conventional thyroidology—dogmatically believing that your good tentative hypothesis is a well-established scientific fact. In this way, thyroidologists have built a superstructure of false beliefs upon their fundamentally wrong hypotheses. In the process, they've ruined the health of incalculable numbers of people. Hopefully, those of us involved in this new movement will learn from that gargantuan mistake in medical history and not repeat it.

"I feel good that you're on our side of the fence regarding health problems resulting from too little thyroid hormone regulation of tissues. Those of us on this side of the fence agree that the conventional approach to diagnosing and treating thyroid-related problems is seriously flawed and doesn't serve most patients well. Yet we disagree about which approach serves patients best. Our beliefs about how best to diagnosis and treat patients with too little thyroid regulation differs from yours. Such differences in beliefs are healthy for the movement. Our group must remain open to differing view points, just in case we've missed something that could make our treatment regimen even more effective than it is. We maintain this attitude although our beliefs and treatment regimen are based on tough logical analyses and scientific studies. (See our studies reprinted in an appendix in my book, The Metabolic Treatment of Fibromyalgia."

This doctor had written in the e-mail he copied to me: "There is an absolute explosion of physicians now "winging it on their own" re the Rx of hypothyroidism." He then wrote: " I believe my approach is the best in the world: Tell me why it's not and why yours is better!" I replied:

I agree that most clinicians are "winging it on their own." They don't have established criteria by which they make dosage thyroid hormone adjustments. I think that the movement we're all involved in will be strengthened if we can influence these clinicians to come to use assessment measures that increase their therapeutic effectiveness.

However, I personally don't believe that measuring the free T4, free T3, or any other circulating hormone level, is the most effective clinical approach. My belief is based partly on the the studies of Escobar-Morreale and colleagues in Spain.[1][2] Their study results make one thing clear: Circulating free T3 and T4 levels don't allow us to accurately predict the T3 concentration in the cells of most tissues. The evidence suggests that there is simply too much variability between different tissues in the same patient. Moreover, there's too much variability between the tissues of different patients. Even more difficult is accurately predicting the physiological and clinical effects of different circulating free T3 and T4 levels. Again, there's simply too much variability to allow accurate predictions.

Barnes was right when, long ago, he wrote that circulating levels of hormones don't measure what's most important—how the patient's tissues are responding to a dosage of thyroid hormone. Our regimen involves multiple measures of how tissues are responding to a particular dosage, repeated at short intervals in a highly systematic way. Our model of assessment is taken from behavior modification, in which I was trained in the early 1970s. We know from hundreds of trial runs that we can precisely control the metabolic status of most patients only by using these multiple measures of tissue response. We adjust each patient's dosage until these measures tell use we've achieved normal tissue metabolic status—regardless of what the patient's circulating hormone levels are. I concede that you can do some fairly good tweaking by using free T3 and T4 levels. But still, if the patient's tissue responses aren't carefully assessed, the clinician isn't focusing on what's most important—the patient's physiological and clinical responses to treatment.

I wrote to this reply to the doctor's e-mail months ago. I've never received a response from him.

Mary Shomon publishes the valuable online newsletter titled Sticking Out Our Necks: The Thyroid Disease News Report. At the top of each issue, she writes, "We're patients, NOT Lab Values!!" The alternative doctors you refer to should heed Mary's emphatic assertion. As usual, she's right, and the doctors are wrong.

References

1. Escobar-Morreale, H.F., Obregón, M.J., Escobar del Rey, F., and Morreale de Escobar, G.: Replacement therapy for hypothyroidism with thyroxine alone does not ensure euthyroidism in all tissues, as studied in thyroidectomized rats. J. Clin. Invest., 96:2828-2838, 1995.

2. Escobar-Morreale, H.F., del Rey, F.E., Obregón, M.J., and de Escobar, G.M.: Only the combined treatment with thyroxine and triiodothyronine ensures euthyroidism in all tissues of the thyroidectomized rat. Endocrinology, 137(6): 2490-2502, 1996.

November 1, 1998

Question: I'm a 29-year old woman with fibromyalgia. My blood tests showed a normal T4 level and low T3 level. My doctor said that this lab result does not mean I have a thyroid-related problem. Do you agree?

Dr. Lowe: The answer depends on what we are referring to as a "thyroid-related problem." Most conventional thyroidologists use the word "thyroid" as a synonym for "thyroid gland." For the moment, let's accept this qualification for the sake of illustration and rephrase your question: Is there a thyroid gland problem that could result in a normal T4 level and a low T3 level? Theoretically, the thyroid gland may dysfunction in such a way that it secretes normal amounts of T4 but less-than-normal amounts of T3. This could result in a normal circulating T4 level and a low T3 level. T3 is the most metabolically active thyroid hormone, but a low circulating T3 level may not result in slowed metabolism and related symptoms. The reason is that most T3 inside cells, where the hormone drives metabolism, is derived from the conversion of T4 to T3. As long as enough T4 reaches the cells and the cells convert enough T4 to T3, metabolism may be normal despite the low circulating T3 level.

Using the term "thyroid" to refer to the thyroid gland, however, is an unfortunate convention. The absence of the qualifier "gland" can leave one confused as to what mechanisms are included in the term "thyroid-related problem." Some writers use this term to refer to problems related to the cellular processing or cellular action of thyroid hormones. If we use this meaning of the term "thyroid-related problem," there are several mechanisms that may cause a normal circulating level of T4 and a low level of T3. These mechanisms may or may not result in slowed metabolism and related symptoms.

For example, various man-made chemical contaminants may induce liver cells to selectively clear T3 from the circulation at a faster rate than they clear T4. Again, if enough T4 enters cells and is converted to T3, metabolism may remain normal despite the rapid clearance of T3 through the liver. Also, for various reasons, the enzymes that convert T4 to T3 (5'-deiodinases) inside cells may not be catalyzing the conversion at a normal rate. This may cause enough slowing of metabolism to result in symptoms, although there is some debate about this in the thyroidology literature.

These examples certainly don't exhaust the possible mechanisms that can result in this pattern of hormone blood levels. What is important to appreciate is that problems of either the thyroid gland or the cells of various tissues can produce normal T4 but low T3 levels. If you have symptoms of hypometabolism, and your lab result (a normal T4 and low T3) is consistent with repeated testing, further investigation is warranted to determine exactly what the mechanism might be. Since you have fibromyalgia, which means you have symptoms of hypometabolism, then further testing and investigation is certainly warranted in your case.

So, to simply answer your question: "My doctor said that this lab result does not mean I have a thyroid-related problem. Do you agree?" If the lab result is consistent with repeated testing, then I disagree. Your test result does not rule out a thyroid gland problem, and it does not rule out a possible problem in the cellular processing or action of thyroid hormones. Your symptoms are as important as your test results. Since your fibromyalgia symptoms indicate that you are hypometabolic, then some "thyroid-related problem" is a distinct possibility. Certainly, further testing is justified.