Question: Despite taking thyroid hormone and having a low TSH, I still have hypothyroid symptoms and infertility. My doctor thinks I’m taking plenty of thyroid hormone. I asked him, “How do you know the thyroid is getting to my cells?” I was told if I had that answer, I would be a very rich girl. Is there any way to tell whether thyroid hormone is getting to my cells?

Dr. Lowe: It’s unfortunate that your doctor couldn’t answer your question. What he should have said is this: We have no direct measure of whether thyroid hormone is reaching your cells. However, we do have many indirect measures.

The first and most important indirect measure is the fact that you're conscious and alive. This indirectly tells us that at least some thyroid hormone makes it into your cells. If none did, we would know it because you would go into a coma and then die.

So I have to slightly reformulate your question: "Is there any way to tell whether enough thyroid hormone is getting to my cells and being used effectively within them." We do indeed have indirect tests that with acceptable accuracy tell us how your cells are responding to however much thyroid hormone you’re taking.

Since the end of the 1800 hundreds, for example, the basal metabolic rate has been used. This test is an accurate enough measurement of oxidative metabolism inside people’s cells. Thyroid hormone powerfully controls the rate of oxidative metabolism. If you have a low metabolic rate from hypothyroidism, then you almost certainly have slow oxidative metabolism and a measurably  slow metabolic rate.

The downside of this test is that there is variability in the measurements, and I now know, from studies I’ve conducted with the test, that the most accurate assessment of a person’s metabolic rate comes from multiple measurements, preferably taken in the middle of the night. Despite the inconvenience required for accurate testing, this test is the single most useful measurement of the cellular effect of thyroid hormone.

As useful as that test is, there are numerous other indirect tests of the cellular effects of thyroid hormone. For example, you can measure your basal temperature at home. You can also measure your basal pulse rate and blood pressure, and your changing body composition (the amount of lean and fat tissue you have). You can have someone strike your Achilles tendon to see if the reflex is visibly faster in the contraction phase than in the relaxation phase. You can also get an ECG (EKG) when you’re deeply relaxed and have a qualified person tell you whether the voltage of the largest upward deflection is too low.

You can also check lists to see how many symptoms characteristic of hypothyroidism or peripheral thyroid hormone resistance you have. It’s important, of course, to consider whether your hypothyroid-like symptoms may have some other cause. Some potential causes other than too little thyroid hormone are a sedentary lifestyle, nutritional deficiencies, a diet that destablizes your blood sugar or is pro-inflammatory. Other potential causes are cortisol or sex hormone deficiencies, and the use of drugs that slow metabolism, such beta-blockers.

You can also have a variety of blood tests to see if your results are consistent with hypothyroidism. For example, you measure your cholesterol and LDL levels. These are high in many people who have wholesome diets and exercise regularly but are under-treated by thyroid hormone. You can have your erythropoietin measured. This is a protein that may be low when under-regulation by thyroid hormone has decreased the oxygen requirement of your tissues. And you can have your anti-thyroid antibody levels measured to see if they are high.

You notice that I didn’t include blood tests for your TSH, free T4, and free T3 levels. These tests are of limited value. They are meaningful only when they are way out of range. If they are in-range or close to in-range, they are useless in telling your whether you have enough thyroid hormone regulation. The only thing they tell us is the effect of the pituitary’s TSH on the thyroid gland, and the effect of the thyroid gland’s hormones on the pituitary. They tell us nothing whatever about the effects of thyroid hormone on the cells of any other body tissues. To infer from the levels of these hormones the thyroid or metabolic status of other tissues is not only indirect—it’s a wild and scientifically-unsound inference.

I could go on and one with a long list of other useful and often useless tests, but my point is this: We have plenty of tests that indirectly measure the cellular effects of thyroid hormone, and they are far more diagnostically meaningful than using the TSH, free T4, and free T3.

When you asked your doctor that question, you were on the right track. He, on the other hand, was way off track. It appears that he was taking part in the modern medical disaster I’ve called the “endocrinology paradigm of hypothyroidism.”[1] From participating in that disaster, he undoubtedly didn’t have the information you asked for, despite it being readily available to any inquisitive person, especially doctors. You’ve undoubtedly suffered from his neglect. I regret that and hope you'll move on to a better educated doctor who can help you recover good health.

Reference

1. Lowe, J.C.: The Metabolic Treatment of Fibromyalgia. Boulder, McDowell Publishing Co., 2000.

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. (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.

Continued at top of right column . . .