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by Jackie Yellin


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The Metabolic Treatment
of Fibromyalgia

by Dr. John C. Lowe
Readers' Comments

 




Responses From
A Recovered
Fibromyalgia Patient

February 8, 2008

Question: My problem must be unusual, as I see very little to nothing online about becoming hyperthyroid when taking any T3-containing hormone. Two years ago, I was doing better on Armour, but I was not completely well. We added T3, and for the first time since my teens, I felt normal and well-adjusted.

In March 2005, I had a flu virus, and that all changed. Laboratory tests showed my doctor I was pretty hypothyroid so he doubled my Armour. I still felt nervous, but down, so he tested again and doubled the dose again. I unknowingly experienced full-blown hyperthyroidism for about a year and a half until my family practitioner suggested all those symptoms could be from too much thyroid hormone.

I’ve been taking much less, but still have horrendous bouts of anxiety, tremors, hot flashes, and high blood pressure. I’ve tried going off the hormones altogether, only to become depressed.

Any suggestions as to how I can get off this nightmarish roller coaster? I did read that adrenals being off can cause problems. I did a 24-hour urine test showing out-of-range cortisol, but my endocrinologist just put me on Synthroid and said the Armour and T3 can make you anxious.

Please tell me what you know.

Jackie: I’m sorry you’ve had so many problems with your thyroid hormone dosage. It sounds as if many of them were due to your doctor’s misunderstanding of how thyroid hormone works in the body and how to properly assess whether or not a patient’s dose should be adjusted.

I want to start by simply giving you some general information. Anyone can become overstimulated from thyroid hormone if he or she takes too much. It’s called "thyrotoxicosis." Thyrotoxicosis can occur from too much of any type of thyroid hormone: Armour, Synthroid, Cytomel, or some other combination of T4 and T3.

What most conventional doctors do not understand is that thyrotoxicosis is a tissue status, not a lab value. You cannot measure whether or not someone is overstimulated from thyroid hormone with only a thyroid function test such as the TSH. A suppressed TSH does not necessarily mean a person has too much thyroid hormone regulating his or her metabolism. For example, some patients have low TSH levels because they have pituitary hypothyroidism. In this condition, the pituitary is impaired and cannot produce enough TSH.

On the opposite hand, the same is true for hypometabolism, which is also a tissue state. The TSH test can tell you something about how the HPT (hypothalamus-pituitary-thyroid) axis is functioning, but it cannot tell you what’s going on inside the peripheral cells and tissues of your body. A normal TSH, for example, does not necessarily mean that your metabolism is normal.

For these reasons (and many more!), laboratory function testing is not the proper way to adjust a patient’s dosage. Your doctor would get a more accurate picture of your status by testing peripheral indices (like your basal body temperature) and assessing other physical signs (like the Achilles reflex) and symptoms (like depression). Dr. Lowe has posted a complete list of symptoms of hypometabolism as well as an explanation of "signs" and "symptoms." See these pages:


http://www.drlowe.com/geninfo/hyposigns.htm and

http://www.drlowe.com/geninfo/hyposymptoms.htm

Here is an excerpt from Dr. Lowe’s book The Metabolic Treatment of Fibromyalgia, page 841. Dr. Lowe is talking about the assessment of hypometabolism, but the methods apply to the assessment of overstimulation as well since both conditions are tissue states:

"Factors other than a thyroid deficiency may cause high serum cholesterol, for example, or a low BBT. These tests, nevertheless, suggest a patient’s metabolic status, and they are useful if monitored regularly in a uniform manner with each patient. When several abnormal peripheral indices are considered together, they provide strong evidence that the patient is hypometabolic. This is especially so when the clinician rules out the influence of other factors that could account for the abnormal results of each peripheral index. When the patient’s indices normalize upon repeated measurements during treatment, this indicates a positive response to her metabolic regimen."

You say: "Laboratory tests showed my doctor I was pretty hypothyroid so he doubled my Armour."

Regardless of how your doctor assessed you, I’ve not heard of a doctor doubling someone’s thyroid hormone dose all at once, much less doing it a second time! According to your email, your doctor basically quadrupled your dose of Armour! It’s no wonder you were overstimulated.

Dr. Lowe doesn’t recommend lab work to decide how a patient should adjust her thyroid hormone dosage. Lab values just don’t tell doctors what they need to know for deciding how any dose of thyroid hormone is working in the body. This is because the tests can’t show us anything about thyroid hormone in the peripheral cells and tissues, as I said above. We describe the reasons why in The Metabolic Treatment of Fibromyalgia.

You say: "I did read that adrenals being off can cause problems. I did a 24-hour urine test showing out-of-range cortisol, but my endocrinologist just put me on Synthroid and said the Armour and T3 can make you anxious."

Yes, inappropriate cortisol levels can certainly cause signs and symptoms. But Armour and/or T3 can’t make a person any more anxious than Synthroid would. Your endocrinologist putting you on Synthroid and giving the ridiculous reason that he or she did, simply shows a complete lack of understanding of how T3 works in the body. Your endocrinologist seems to also be ignoring your out-of-range cortisol as a possible source of problems.

You ask: "Any suggestions as to how I can get off this nightmarish roller coaster?"

Yes. You must find a doctor who has enough knowledge and understanding to treat you (or be willing to learn how) using tools other than thyroid function testing. You can read and learn about all this yourself in Dr. Lowe’s book The Metabolic Treatment of Fibromyalgia, or you and/or your doctor can consult with Dr. Lowe. Dr. Lowe wrote the book precisely to teach patients and physicians what they need to know for the process of getting patients well. A consultation with him will be your quickest and greatest source of reliable information that can help you be well again.

Thanks for your question

July 23, 2003

Question:
My daughter is 27-years-old and has just been diagnosed with fibromyalgia. I'm thinking of buying her a copy of The Metabolic Treatment of Fibromyalgia, but I'm concerned that it may be too too technical for patients to read? If we show it to an alternative medicine practitioner, will she been able to interpret it and make use of it? Thanks.

Jackie:
Dr. Lowe and I (along with several assistant editors and proofreaders) worked very hard to make The Metabolic Treatment of Fibromyalgia easy for patients to read. Certainly any practitioner will be able to use the information in the book and follow Dr. Lowe's protocol. The explanation of how to use the protocol is precise and detailed, so anyone with the desire to help patients get well will benefit greatly from the book—in fact, it would be almost impossible for a practitioner to understand all that he or she needs to know without the book.

What makes The Metabolic Treatment of Fibromyalgia so amazing is that in addition to the information I described above (the "how-to-do-it," so to speak), it also contains the explanation of "why do it." In other words, the logic underlying Dr. Lowe's hypothesis is clearly laid out, and the science—enough science to satisfy any thinking person—is complete, clearly explained, and totally compelling.

We usually tell patients that perhaps 15% of the book will be more detailed than they want to read, though that 15% is important to practitioners. But the majority of the book, at least 85%, is fascinating information that patients will want to read. That's about 1071 of the 1260 pages. The book looks imposing and authoritative, and that is part of its strength. (The book contains over 6000 references from the conventional medical literature.) Nothing that looks wimpy and simple will be convincing to most doctors. 

But don't be intimidated by the book's appearance—it's full of interesting and important information that you will not be able to read in any other book. The Metabolic Treatment of Fibromyalgia is the key to unlocking the puzzle of your daughter's illness, and it's an indispensable tool for helping her recover her health. Thanks for your question.

Also read the publisher's explanation of how the Dr. Lowe 
and his editors, including Jackie, made the book understandable. 

January 22, 2003

Question:
I am interested in making donations to your foundation. The page that describes how your funds are used is not specific. Can you please give me information in percentages of where the funds go. Example: administration 5%, research 45%, education 50% etc. Thank you for your time. This information is important to me in establishing if you are the correct foundation for my donations.

Jackie: The Fibromyalgia Research Foundation is totally volunteer. So, there are no administration costs. We all volunteer our separate office spaces for the work we do for FRF. There are occasionally some supplies we must buy, like paper and stamps, but these expenses are lumped under education, since that's what we use them for. Our mailings distribute information to the general public. We also send thank-you receipts for the donations we receive, but our stamps for these are donated.

All of our donations come from the general public, and many of our donors are former fibromyalgia patients who have recovered their health through the use of the protocol Dr. Lowe developed and refined. That's why our two main purposes are disseminating information about the metabolic treatment of fibromyalgia and continuing the body of research in this area. Metabolic rehabilitation has given thousands of patients back their lives, and information about this treatment protocol gives hope to many thousands more.

We tend to spend money in waves. For example, during the time of our three double-blind studies, the funds we used went toward treating the patients in the studies with either T3 or placebo. Dr. Lowe donated his time, as did I and all the other researchers. We prepared the papers for publication strictly on our own time. Baylor University Department of Family Medicine donated their statisticians, etc., etc. We believe we've been able to do more with a small amount of money than any other small 501(c)3 organization in the country. I would say that during periods of research, we spend 65% for that research and the other 35% on education materials (like newsletters or copies of research papers). During other times, that percentage shifts back toward being almost 100% for education purposes.

Research studies, as you surely know, cost vast amounts of money. We are working on raising the funds for our next major research project right now. In the meantime, we continue to do seminars on a fairly regular basis in local areas in which we have access to libraries and other places that donate space for non-profit, education events. We do not charge admission fees; instead we ask for donations. At these seminars, we do give out educational materials, so the cost of printing and paper is the only amount we spend on any given seminar.

Our Board of Directors (also, all volunteer) is frugal, and spends money only when absolutely necessary. Since our funds are so limited and we have big plans, so to speak, we have to be extremely careful that the money we do spend is well spent.

So, this is why we have not been more specific at our website: the percentages of how we spend money change over time depending on the priority of projects we have. But I can assure you that nowhere will 100% of your donated money be better spent or go to a worthier cause that changes people's lives every day, than the Fibromyalgia Research Foundation.

I hope you decide that we are a worthy organization. For information on how to donate to FRF, please visit www.drlowe.com and click on the FRF button on the home page.

Thanks so much for your interest in our work.

Jackie Yellin
Education Director
Fibromyalgia Research Foundation

September 16, 2002

Question:
I am hypothyroid and don't believe the Synthroid is helping me enough. I’ve been reading for over a year about the T3/T4 debate. I work in medical/pharmaceutical advertising as an editor, so I have some background in the medical field and the workings of marketing. As a result, I’m often suspicious of mainstream medicine and try to read about and find answers to what ails me. I come in contact with a lot of doctors in addition to my own. I’ve tried to get my GP to prescribe T3, but she sort of flipped out over it, telling me she's "heard of that argument before and doesn't want to go through it again," blah blah blah.

My point is: I do want to try T3. The problem I'm having, however, is with Dr. Lowe's credentials. He's a chiropractic doctor, not an MD or osteopath. To show MDs his writings doesn't get one very far. And, frankly, I'm a little uptight about believing what he says just because he's got a textbook and a website. Why should I believe he knows anything about metabolism? I'm not trying to be funny or nasty. I just want a good explanation that will convince me I can trust what he says. Textbooks to buy and treatment centers to attend (and pay for) don't a doctor make, if you know what I mean. Please convince me. How many patients has he treated? How many have recovered (from fibromyalgia or hypothyroidism)? Why isn't he published in more well-known journals? If he’s so successful, I can't believe there aren’t some other MDs out there who wouldn't be involved in all of this. Enquiring minds want to know.

Jackie: First of all, let me juxtapose two of your thoughts. Please look at them together.

"Why isn't he published in more well-known journals?"


"The problem I'm having, however, is with Dr Lowe's credentials. He's a chiropractic doctor, not an MD or osteopath. To show MDs his writings doesn't get one very far."

You've pretty much answered your own question. The reason Dr. Lowe isn’t published in "well-known" journals is that the "well-known" journals will not publish a study with a chiropractic doctor as the lead author. We know this because we submitted the first two of our double-blind studies to the most well-known of medical journals (though I'm not going to mention any names). We even got to read some of the peer reviewers' comments—and they were all favorable. But the Editor of a journal, as you should know, has the final say. And the Editor is the only one who actually knows the credentials of the authors. So, since "DC" appeared after Dr. Lowe's name, none of our studies were published in these journals. This happened even though the second and third authors were MDs, and the studies were done in cooperation with one of the largest and most respected medical schools in the country.

"If he is so successful, I can't believe there are not some other MDs out there who wouldn't be involved in all of this."

As my last paragraph explains, MDs have been the involved in our work. Of course, you would know of their involvement if you had read any of our double-blind studies. When you do get to read our published studies and The Metabolic Treatment of Fibromyalgia, you’ll see that the quality of our work meets the highest standards in science publishing. The rejection of our research papers by "mainstream" journals is due to the politics of the editors of the journals, not to the quality or value of the research.

Now I want to address the most important question you ask, which is:

"And, frankly, I'm a little uptight about believing what he says just because he's got a textbook and a website. Why should I believe he knows anything about metabolism?"

The answer to this question is, of course, you shouldn't. You shouldn't believe anyone just on his or her word alone. You should do some reading to find out if what Dr. Lowe is saying is scientifically valid. In fact, you should do a lot of reading. Dr. Lowe's "textbook," as you call it, has over 6000 references—all of which come from conventional medical journals (excepting only the references to our own studies).

Since we're on the subject of journals, I must point out to you that the most well-respected journal for medical theory is Medical Hypotheses. Most medical libraries carry this journal and it is Medline-indexed. The Editor of Medical Hypotheses, Dr. David Horribin, is a rare exception among medical journal editors. He is a truth-seeker and a formally-trained, professional scientist. Unlike most physician/editors who use the word "science" a lot but have no formal scientific training, Dr. Horribin is interested only in valid and logical science. It is noteworthy that Dr. Lowe's hypothesis paper ("Mutations in the c-erbA beta1 Gene: Do They Underlie Euthyroid Fibromyalgia?") appears in Medical Hypotheses, 48(2):125-135,1997. The paper was published, I might add, without a single revision (which is unusual in journal publishing). This would be an excellent paper for you to start with in evaluating for yourself the quality and credibility of our work.

Your best and easiest-to-use resource (dare I say it?) is Dr. Lowe's book, The Metabolic Treatment of Fibromyalgia. If you're a little suspicious about buying it, why don't you ask your local medical library to order it for their reference section. That way, you'll have access to it along with a lot of other people.

The Metabolic Treatment of Fibromyalgia is no ordinary textbook, which would be obvious to you after reading a bit of it. Yet you question its worth without even the slightest review or evaluation. A professional person such as yourself should be aware of the proper approach for judging the merit of an idea. The proper approach is to evaluate the evidence for and against the idea. I find it strange, then, that so many professional people fail to use that approach, and instead, question someone’s theories based on his credentials. Focusing on a person’s credentials rather than the evidence for or against his argument is so common a mistake in thinking that it has a formal Latin name: ad hominem.

As for the numbers you want, 85% of Dr. Lowe's patients are either significantly improved or completely recovered (this means they no longer meet the criteria for fibromyalgia). I couldn't begin to tell you how many patients they've treated over the years. But Dr. Lowe has been helping fibromyalgia patients get well since 1989. You can make an estimate for yourself. (And by the way, we began working on the "textbook" around the same time. It was not something done in haste. The book was published in 2000.)

In short, you’re asking me to do your research for you. But it's not my job to "convince" you. It's your job to do your own research and judge for yourself what will be the best course of action for you.

September 14, 2002

Question:
I’ve had fibromyalgia since I was about fourteen but wasn’t diagnosed until 1994. Two years ago I had a bad fall. I fell on one knee and bruised it badly. It’s now chronically swollen. I’ve been attended by an orthopaedic surgeon who performed two arthroscopic surgeries, one with a lateral release. After each surgery, the surgeon noted that the fat pad was still chronically swollen. I haven’t been able to recover from this injury, and since my fall, my energy level has been terribly low. It’s never been great, but now it's really bad. Is it possible that the fall aggravated my fibromyalgia and thus my energy level as well?

Jackie: I'm going to put here a quotation from a response I wrote to another person. (More from me after the quotation.)

"Dr. Lowe believes that at the point when metabolic demand on a person's body becomes greater than that body's metabolic capacity, symptoms of hypometabolism begin. For a person whose metabolic capacity was marginal to begin with, even the slightest increase in metabolic demand may exceed that person’s capacity. Thus, for each patient, there's usually some trigger—some point at which demand exceeds capacity—that "caused" the symptoms to begin. For some patients, it's an illness; for some, a pregnancy or other stress. But the trigger is unimportant; what's important is that the person's body couldn't recover from the physical stress the trigger caused. The reason the body couldn't recover, for most patients, is inadequate thyroid hormone stimulation of cellular metabolism."

Since you've had fibromyalgia most of your life, you've had inadequate metabolism for most of your life. In light of this, your low energy level is perfectly understandable. The quotation refers to the beginning of fibromyalgia symptoms, but it’s appropriate also for explaining factors that exacerbate fibromyalgia. In your case, this was your fall. The injury to your knee put an even higher metabolic demand on your body, which your body couldn't meet. So, your energy level has decreased further as your body has tried to cope with the injury. As a result, you were unable to recover from the injury, and you feel generally worse than before the injury.

Your knee failing to heal properly could be explained by inadequate thyroid hormone regulation of cellular function. Thyroid hormone powerfully regulates the genes that control the production of two anabolic hormones, growth hormone and somatomedin C. Normal amounts of these two hormones are necessary for connective tissues to heal properly. If your thyroid hormone level is too low (as in hypothyroidism), or if the cells that produce the two anabolic hormones are resistant to thyroid hormone, your body’s production of growth hormone and somatomedin C may be inadequate. If so, this would explain the constant swelling of your knee and its inability to heal.

Of course, all of this is conjecture since I’m not a clinician. But I’d suggest that you find a copy of Dr. Lowe's book, The Metabolic Treatment of Fibromyalgia. Reading it will help you understand lowered energy level and impaired healing in fibromyalgia patients, as well as all the other mechanisms involved in fibromyalgia and hypometabolism. The book will tell any physician exactly what he or she needs to know to help you get well. And more importantly, it offers hope for your recovery.

August 5, 2002

Question:
What can you tell me about caffeine, particularly strong coffee, and fibromyalgia? For me, it works as a mild analgesic, but too much seems to cause migraine headaches. I love my coffee! I usually drink 2-to-3 cups each day. If the caffeine is truly making things worse, I'll have to ease off, but I'd rather not. Any thoughts?

Jackie: Great news! Caffeine can actually help fibromyalgia patients. Dr. Lowe is an advocate of caffeine use by fibromyalgia patients—unless, of course, it bothers you. A small percentage of people get an unusually strong stimulatory reaction from coffee or have other adverse effects from it; these people probably shouldn’t use caffeine. (This is true in the general population as well as among fibromyalgia patients.) But for most patients, caffeine can help control fibromyalgia symptoms, mainly because of its ability to temporarily raise the resting metabolic rate.

There are several long sections in The Metabolic Treatment of Fibromyalgia about the effects of caffeine on fibromyalgia patients and how they can use it judiciously. Caffeine has a positive effect on pain, depression, mood—I could go on and on. Instead, here are two very short quotations from The Metabolic Treatment of Fibromyalgia:

From pages 1035-1036:

"Because it is the most commonly used drug today, caffeine has been subjected to extensive clinical and experimental study.
[160] Caffeine reduces, and in rare cases appears to temporarily relieve, some fibromyalgia patients' pain, fatigue, weakness, cognitive dysfunction, and depression. Caffeine increases the resting metabolic rate, internal and skin temperatures,[58][59][60][61][62] and mitochondrial oxygen consumption.[63][65] It produces physiological arousal,[87][88] can improve mood[87][88][91] and perception of problems,[90,p.9] and mitigates pain.[1,p.92][101][103][104][105][106][108] [109][110][111][112]"

From page1038:

"Effects of Caffeine on Cognitive Function. For people in general, caffeine improves cognitive function. My clinical experience has shown that this is especially likely if a patient's cognitive abilities are impaired as a feature of fibromyalgia.

There are many published studies on the beneficial effects of caffeine on cognitive function. It fact, caffeine is listed as a mild brain stimulant and 'cognitive enhancer.'[5]"

Since caffeine may have adverse effects for some people, Dr. Lowe also explains those in The Metabolic Treatment of Fibromyalgia.

I hope this information helps you make a decision about whether or not to give up your coffee. Sounds like if you have it in moderation—so you don't experience migraines—coffee's analgesic effects certainly benefit you. Fibromyalgia patients need all the help they can get!

References

1 Travell, J.G. and Simons, D.G.: Myofascial Pain and Dysfunction: The Trigger Point Manual, Vol. 1. Baltimore, Williams and Wilkins, 1983.

5. Riedel, W.J. and Jolles, J.: Cognition enhancers in age-related cognitive decline. Drugs & Aging, 8(4):245-274, 1996.

58. Koot, P. and Deurenberg, P.: Comparison of changes in energy expenditure and body temperatures after caffeine consumption. Ann. Nutri. Metab., 39(3):135-142, 1995.

59. Yoshioka, K., Yoshida, T., Kamanaru, K., Hiraoka, N., and Kondo, M.: Caffeine activates brown adipose tissue thermogenesis and metabolic rate in mice. J. Nutri. Sci. Vitaminology, 36(2):173-178, 1990.

60. Dulloo, A.G., Geissler, C.A., Horton, T., Collins, A., and Miller, D.S.: Normal caffeine consumption: influences on thermogenesis and daily energy expenditure in lean and postobese human volunteers. Am. J. Clin. Nutri., 49(1): 44-50, 1989.

61. Tulp, O.L. and Buck, C.L.: Caffeine and ephedrine stimulated thermogenesis in LA-corpulent rats. Pharmacol. Toxicol., 85(1):17-19, 1986.

62. Poehlman, E.T., LaChance, P., Tremblay, A., et al.: The effect of prior exercise and caffeine ingestion on metabolic rate and hormones in young adult males. Can. J. Physiol. Pharmacol., 67(1):10-16, 1989.

63. LeBlanc, J., Jobin, M., Cote, J., Samson, P., and Labrie, A.: Enhanced metabolic response to caffeine in exercise-trained human subjects. J. Appl. Physiol., 59(3):832-837, 1985.

65. Jung, R.T., Shetty, P.S., James, W.P., Barrand, M.A., and Callingham, B.A.: Caffeine: its effect on catecholamines and metabolism in lean and obese humans. Clin. Sci., 60 (5):527-535, 1981.

87. Gilliland, K. and Bullock, W.: Caffeine: a potential drug of abuse. Advances in Alcohol and Substance Abuse, 3: 53-73, 1983-1984.

88. Sawyer, D.A., Julia, H.L., and Turin, A.C.: Caffeine and human behavior: arousal, anxiety, and performance effects. J. Behav. Med., 5:415-439, 1982.

90. Thayer, R.E.: The Biopsychology of Mood and Arousal. New York, Oxford University Press, 1989.

91. Gilliland, K. and Bullock, W.: Ad lib caffeine consumption, symptoms of caffeinism and academic performance. Am. J. Psychiat., 138:512-514, 1981.

101. Aicher, B. and Kraupp, O.: The value of fixed combination analgesics as exemplified by Thomapyrine. Wiener Klinische Wochenschrift, 108(8):219-233, 1996.

103. Currier, S.R., Wilson, K.G., and Gautheir, S.T.: Caffeine and chronic low back pain. Clin. J. Pain, 11(3):214-219, 1995.

104. Hoyovadillo, C., Perezurizar, J., and Lopezmunoz, F.J.: Usefulness of the pain-induced functional impairment model to relate plasma levels of analgesics to their efficacy in rats. J. Pharm. Pharmcol., 47(6):462-465, 1995.

105. Ward, N., Whitney, C., Avery, D., and Dunner, D.: The analgesic effects of caffeine in headache. Pain, 44:151-155, 1991.

106. Laska, E.M., Sunshine, A., Mueller, G., et al.: Caffeine as an analgesic adjuvant. J.A.M.A., 251:1711-1718, 1984.

108. Kaiko, R.F., Wallensstein, S.L., Rogers, A.G., et al.: Analgesic and mood effects of heroin and morphine in cancer patients. N. Engl. J. Med., 304:1501-1504, 1981.

109. Taenzer, P., Melzack, R., and Jeans, M.E.: Influence of psychological factors on postoperative pain, mood, and analgesic requirements. Pain, 24:331-342, 1986.

110. Ward, N., Bokan, J.A., Phillips, M., et al.: Antidepressants in concomitant chronic back pain and depression: doxepin and desipramine compared. J. Clin. Psychiat., 45: 54-57, 1984.

111. Ward, N., Bokan, J., Ang, J., et al.: Differential effects of fenfluramine and dextroamphetamine on acute and chronic pain. In Advances in Pain Research and Therapy, Vol. 9. Edited by H.L. Fields, New York, Raven Press, 1985, pp.753-760.

112. Greden, J.F., Victor, B.S., Fontaine, P., et al.: Caffeine-withdrawal headache: a clinical profile. Psychosomatics, 21:411-418, 1980.

160. Wolfrom, D. and Welsch, C.W.: Caffeine and the development of normal, benign, and carcinomatous human breast tissues: a relationship? J. Med., 21(Suppl.5):225-250, 1990.

More About Caffeine

 

March 18, 2002

Question:
I have found a doctor in England (where I live) who uses Dr. Dennis Wilson's approach to hypothyroidism found in chronic fatigue and fibromyalgia (which I was diagnosed with). He’s given me timed-released T3 and told me to keep cycling up the dose until my body temperature is 98.6 degrees and my symptoms have resolved. He advised me to do this as long as I don’t exceed 75 mcg twice a day (150 mcg in total). I've gone up to 75 mcg twice a day, but I find it still isn't enough to fully alleviate my symptoms. So I'm using 90 mcg twice a day out of desperation. This dose is better but still isn't sufficient. I’ve only improved about 50% to 60%. Should I be exceeding 150 mcg a day, and, if so, why? And why hasn't my body temp become normal and my symptoms been 100% alleviated at the max dosage. I’m rapidly losing faith that I can cope with still being ill, so any advice will be greatly received.

Jackie: I think the best way to address your questions is to quote the old adage "form follows function." In other words, the protocol a patient uses is developed from the mechanism believed to underlie his or her symptoms. In the case of Dr. Wilson, his proposed mechanism—that insufficient body temperature (due to "stuck" deiodinase) is the cause of your symptoms—has dictated the protocol your doctor has given you. Unfortunately, Dr. Lowe and all of us at the Fibromyalgia Research Foundation do not believe that Wilson's mechanism has any scientific basis. And following that, his protocol would not be appropriate to effectively alleviate fibromyalgia symptoms. In your case, it seems that we are correct.

The reason your body temperature has not risen to the proposed "normal" may be that it isn't going to, no matter how much T3 you take. Dr. Lowe decided many years ago to research the "temperature rise" idea as an assessment for measuring the improvement in fibromyalgia patients’ symptoms. What he found is that temperature is an unreliable guide. He studied the research of Dr. Sam Refetoff, the thyroidologist at the University of Chicago who discovered general resistance to thyroid hormone. Here is a passage from Dr. Lowe's book, The Metabolic Treatment of Fibromyalgia:

"Refetoff also found that the body temperature is not a reliable index of metabolic change. He hospitalized patients and measured various indices of metabolic status as he administered and increased the dosage of T3. Simultaneously, he recorded changes in core temperature. To measure core temperature, he had patients swallow, at intervals, glass capsules that contained thermometers. Each capsule was equipped with a device that transmitted signals from the thermometer to a receiver that recorded the alimentary canal temperature during the day and night. Refetoff found that changes in temperature did not correlate well with other measures of metabolic status. For example, at high T3 dosages, patients had negative nitrogen balance. This indicates protein catabolism and may have been a thyrotoxic effect. Temperatures in general, however, did not increase at rates or to levels that were proportional to this and other measures of metabolic status.[1] Refetoff . . . also stated that there are many factors that affect the basal body temperature, so it is not a specific measure of metabolic status.[1]"[2, p.256]

Dr. Lowe has a detailed section in his book that presents a scientific argument against Wilson's mechanism and protocol. But he sums it up this way:

"Clinically, the important matter to consider is that using body temperature to adjust thyroid hormone dosage is to use a gauge that for too many people is not snugly correlated with the desirable changes in tissue metabolic status. Some patients recover from fibromyalgia symptoms and signs with little if any change in body temperature despite taking supraphysiologic dosages of thyroid hormone. In these patients, it appears that thyroid hormone regulation of gene transcription increases the levels and activity of neurotransmitters, hormones, and enzymes other than those principally involved in heat generation. And it is these biochemical products of thyroid hormone regulation of gene transcription that improve the patient's status—all without the increases in body temperature that Wilson argues is the indispensable prerequisite to patient improvement."[2,pp. 845-846]

Since we believe that Wilson's proposed mechanism is scientifically unjustified, we also believe that Wilson's treatment regimen (being based on that mechanism) is inadequate and inappropriate. A patient's lack of improvement, despite a very high dose of T3, may result from the very use of timed-release T3 that Wilson advocates.

Dr. Lowe believes that the mechanism of inadequate thyroid hormone regulation of gene transcription for most euthyroid (having normal thyroid function test results) patients is peripheral resistance to thyroid hormone. This is a problem at the cellular level, most probably at the T3 receptor, and has nothing to do with inadequate conversion of T4 to T3. What the scientific research tells us is that when a mutated T3 receptor is "flooded" with T3, normal transcription regulation resumes. What this means for the patient is that a higher than normal, or supraphysiologic, dose of T3 may activate previously deficient thyroid hormone regulation of gene transcription. Timed-release T3, by definition, is slowly released into the body systems. But peripheral resistance to thyroid hormone requires a dose that will "flood" the T3 receptors—an "all-at-one-time" dose, based on the patient's specific needs.

For a fibromyalgia patient with true thyroid hormone resistance, arriving at the appropriate dosage of T3 is based not on temperature change, but primarily on symptom improvement determined by clinical assessment. The patient must also take nutritional supplements and exercise to tolerance (to facilitate and capitalize on his or her improving status). As the patient's dosage is titrated according to improvement of symptoms, the patient begins to recover. When that patient's "correct" dose is reached, he or she is well and will have to take T3 for life.

References

[1] Refetoff, S.: Personal communication. April 27, 1992.

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

March 4, 2002

Question: I have fibromyalgia (diagnosed 5 years ago). Along with exercise and careful eating, it is 80% under control with amitriptyline and Flexeril. I still experience feeling cold and am easily stressed. I was told that starting a low dose of T3 would help. What T3 product, if any, has been most useful with fibromyalgia patients?

Jackie: It sounds like you were told about the idea that low dose T3 enhances the effects of an antidepressant. Psychiatrists in the 1970s were the first to explore the use of T3 for depression. They eventually discovered that T3 alone works as well or better than T3 plus an antidepressant (in proper doses, the T3 also relieved their patients of all "fibromyalgia-like" symptoms). The "low dose T3" idea, of course, applies to depression. Since your nagging symptoms of cold and being easily stressed don't fit that requirement, it's doubtful that a low dose of T3 would be of much benefit to you in addition to your antidepressants.

In our research studies, FMS patients took Cytomel (synthetic T3). The majority recovered from all their FMS symptoms and remain well today. The dosage of Cytomel must be individually titrated to each patient's needs. If the dose is too small, it will not only be ineffective, it may suppress the patient's natural thyroid gland function without compensating for the gland’s reduced secretion of thyroid hormone. In other words, too small a dose may actually cause the patient to have less thyroid hormone regulating her metabolism. (Dr. Lowe has explained this for patients treated with too little T4.) How small is too small? Dr. Lowe recommends that patients start with a full replacement dose, which of course, may be different for each patient.

The best way to use T3 for fibromyalgia symptoms is with Dr. Lowe's protocol. Of course, with this protocol patients would not be taking amitriptyline or Flexeril. In addition, the patient would exercise to tolerance (which you're already doing) and take nutritional supplements.

To specifically answer your question, Cytomel is the T3 product your doctor is probably thinking about. But using it in a small dose to try to enhance the effects of amitriptyline is simply putting a band aid on a stab wound. If you try that and it doesn't work for you, you might consider trying Dr. Lowe's protocol (which is completely explained in his book, The Metabolic Treatment of Fibromyalgia). It has proven to be very effective in helping FMS patients completely recover.

July 10, 2001

Question:
Hi, I am a 72-year-old woman, who has been on Synthroid since the age of 17. I was diagnosed then because of my dry skin and losing lots of hair. I was put on 1.5 mg of Synthroid, but never felt much better. I finally told my doctor to switch me to Armour Thyroid, or I will continue to look for a doctor who would. I am now on 1.5 grains of Armour. I do feel a little better, but don't feel I'm getting the right dosage, as I never stopped losing so much hair. But my doctor continues to tell me all my tests are now within range. Why then do I lose so much hair? The sink is filled with my hair. Thank you for any suggestions you can give me.

Jackie: I'm sorry you've had to live so many years without much improvement. Dr. Lowe, too, has found that Synthroid does not work well for many people. So, I'm glad that you are now taking Armour. Do you take vitamins too? Dr. Lowe has posted on the web page the nutritional supplements he recommends. It is important for people who take thyroid hormone to also take vitamins. As the thyroid hormone increases your metabolic rate, the vitamins will take part in biochemical reactions that will enable you to capitalize on that increased metabolism. If the body is working faster and better, it needs more vitamins and minerals to accomplish the job!

Also important is some form of exercise. Do you walk or exercise in some other way? If your increase in metabolism is going to help you feel better, you need to use it to the best advantage. And that means adding some form of exercise-to-tolerance to the mix.

And last, of course, is the fact that "all my tests are now within range" doesn't mean much. Thyroid blood panels cannot tell you what the effect of the thyroid hormone you do have actually is on your cells. In other words, your symptoms should be your doctor's guide. He does need, however, to be especially careful because of your age to monitor your heart if and when he decides to increase your dose. So many years of being under-stimulated may contribute to problems later on—so you and your doctor need to be careful and go slowly with any dosage increases. This does not mean you shouldn't work with him to get to your right dose, it just means you need to work together.

The best thing you could do is to get a copy of Dr. Lowe's book, The Metabolic Treatment of Fibromyalgia. Since your doctor doesn't seem to know exactly how to proceed, the information in this book will be a huge help to you both. The book describes in detail how to proceed with dosage titration and what is necessary for the safety of the patient—no matter what the patient's age. The complete protocol is spelled out in great detail, and certain thyroid "myths" are dispelled—like the belief that doctors should use blood tests to arrive at a dose. Having this book is the best thing you could do for yourself—read it carefully so you'll know what kind of treatment to demand. And I agree with you—if your current doctor won't help you, you should find another one who will!

June 28, 2001

Question:
As I understand it, Dr. Lowe claims that all fibromyalgia patients suffer from partial cell resistance to thyroid hormone, and they must take "supra-physiological" doses of T3 to overcome the resistance. Is this correct?

Jackie: Not all fibromyalgia patients have partial cell resistance to thyroid hormone. Dr. Lowe has never said that they do. Most fibromyalgia patients, however, do have the need for thyroid hormone therapy. Those patients with partial cell resistance require T3, and generally in supra-physiological amounts.

Our studies show that most fibromyalgia patients who don't have resistance have some form of hypothyroidism. The majority of these patients do well on Armour, but at higher doses than most doctors allow patients to take.

Rememberand this is importantthat a single patient may have both hypothyroidism and partial cell resistance to thyroid hormone. Most patients in this category must use supra-physiological doses of thyroid hormone.

April 14, 2001

Question:
What is the difference between Synthroid and Cytomel?

Jackie: Synthroid a brand of the thyroid hormone T4, and Cytomel is the brand of the thyroid hormone T3. T4 has some metabolic functions in cells, but T3 is the thyroid hormone that is most metabolically active.

For the most part, the body converts the T4 produced by the thyroid gland into T3. T4 has 4 iodine atoms, and T3 has 3 iodine atoms. An enzyme (5'-deiodinase) causes the release of an iodine atom from the T4 molecule, converting it to T3. The T3 then attaches to a T3-receptor in the nucleus of a cell. The T3 and its receptor then either stimulate or inhibit the activity of the gene they are attached to, depending on the particular gene. The change in the activity of the gene then contributes to the metabolic effects of the T3 on the body.

The T3 in Cytomel has much stronger genetic and metabolic effects than does the T4 in Synthroid. Also, some patients' cells may not convert T4 to T3 efficiently or in large enough volume, making Synthroid a less useful medication than Cytomel. In addition, if a patient has any degree of cellular resistance to thyroid hormone, he or she may not benefit from the T4 in Synthroid. The patient with cellular resistance to thyroid hormone needs the T3 that Cytomel provides to override that resistance.

January 17, 2001

Question:
I bet you get this question a hundred times a day! I have been diagnosed as having fibromyalgia by two different doctors. I have read the clinical studies conducted by Dr. Lowe, and I believe this treatment may help me. What I very much need is a concise explanation of the pharmaceutical protocol for euthyroid fibromyalgia—the dosages of thyroid, type, etc. I am trying to convince my doctor to do this (and of course my insurance will cover it if from my in-plan physician), but I have not been able to find this on the web site—only a reference to T3. Can you help? Thank you in advance for any assistance you can provide! 

Jackie: I do not recommend that you begin this protocol without the information in Dr. Lowe's new book, The Metabolic Treatment of Fibromyalgia. Your physician will be thrilled with the science, and the complete protocol is spelled out. This is not a simple treatment—i.e., you don't just "take thyroid hormone." You must be monitored according to the methods described, since your gauge is your own body's response to the hormone on many measures of peripheral tissue status. Both you and your physician need to understand the "rehabilitation" aspect of the treatment. You must participate by taking nutritional supplements and exercising to tolerance. Your physician must understand how to monitor you, how to know when you've arrived at your correct dosage, and how to look for overstimulation from thyroid hormone (thyrotoxicosis—which, by the way, you cannot assess with blood tests!).

Because each patient is an individual with a different history, lifestyle, and taking different combinations of medications, it is not possible to give an adequate recommendation for dosage without examining you. Your physician must do this, and you both must learn where you are and where you want to go. Your dosage must be titrated exactly for you as an individual.

So, the best help I can give you is to recommend your acquiring this large reference book. (You can read all about The Metabolic Treatment of Fibromyalgia at the publisher's website.) Once you have the book and have specific questions that you would like to direct to Dr. Lowe either by snail mail or e-mail, he will be happy to help guide you and your physician to the appropriate information that will answer your questions. In the meantime, if you or your physician would like to write to Dr. Lowe about the protocol or the science behind it, I would suggest sending questions in an e-mail to AskDrLowe@aol.com.

November 29, 2000

Question:
I was diagnosed with hypothyroidism three years ago after my lab tests revealed a TSH of 6.2. I had been searching for the reason I felt chronically fatigued, skin problems, weight fluctuation, depression, and hair loss. My periods were extremely heavy and I was being treated for anemia every few months. I have been on Synthroid since my diagnosis with no improvement. In fact my dosage was increased over that three years from 0.25 to 0.150. All this time I continued to have symptoms of hypothyroidism.

l finally researched the internet and presented the research to my MD. He was not very open initially. I even presented Dr. Lowe's studies and an article from the New England Journal of Medicine. My doctor finally prescribed Thyrolar #2 which made me feel 100% better from how I had been feeling. After 3 months it seems I have bottomed out and once again am having breakthrough symptoms. I take the Thyrolar in the am before breakfast and do not take any other thyroid medication during the day. Any suggestions on how I can communicate this problem and any solutions you can offer? My MD is still very leary about diverting from his medical school teaching. I am a 42 year-old female. Thank you in advance for reading my long question. I appreciate any feedback you can offer.

Jackie: Do you take nutritional supplements? B vitamins especially are very important. The thyroid hormone increases the metabolic reactions in the body, and in doing so, it increases the body's demand for the substances needed for those reactions. Thus, your need for vitamins and minerals increases.

Also, once you have increased your metabolic capacity with thyroid hormone, you need to capitalize on that capacity by exercising to tolerance. Exercise helps to normalize metabolism, and it will help your dosage of thyroid hormone work better in alleviating your symptoms. If your dosage is the correct one for you, you should be able to achieve a "training effect" from the exerciseboth aerobic exercise and weight training. 

Of course, even after doing all these things, your dosage may not be correct. But I would suggest you try nutritional supplements and exercise first. Consult your doctor about these things--he should be encouraging and able to help you set up an exercise and nutritional program. Then after you've tried these, if you still have symptoms perhaps suggest to your doctor that by assessing your symptoms (not blood levels) and checking for any signs of overstimulation (again, clinicallynot with TSH levels), he may be able to help you arrive at a better dosage. What we are trying to get physicians to understand is that they must treat the patient, not the patient's TSH level.

If, after all this, you still have symptoms, perhaps your physician would consider Cytomel alone. For some patients, T4 in any form just doesn't work. If the patient has peripheral cellular resistance to thyroid hormone, only T3 will work. Your immediate response to the addition of T3 in the Thyrolar should show your doctor that it will benefit you. (And you might point out that even some endocrinologists use Cytomel alone when nothing else works!)

Hope some of these suggestions help. Thanks for your question

March 15, 1999

Question:
I have been on Cytomel for 2 months now. I am also using 25 mg of amitriptyline to help get more restful sleep, plus I am taking both prenatal vitamins (trying to get pregnant) and calcium supplements. My doctor has told me to exercise to tolerance. Can you tell me if I'm doing the correct things and why exercise is important to Dr. Lowe's protocol?

Jackie: Dr. Lowe's protocol does recommend that patients try to wean off all antidepressants as soon as possible after beginning thyroid hormone. The Cytomel--once a patient reaches the appropriate dosageusually takes care of the problem of getting restful sleep. (Thyroid hormone increases serotonin, so the antidepressant will be unnecessary.) The protocol also requires that patients take vitamin supplementsespecially B vitaminsto compliment the thyroid hormone regimen. The B-vitamins are especially important to help the body keep pace with the increased drive that thyroid hormone provides for the metabolism. Thyroid hormone induces metabolic speed-up reactions, but it can't provide all the necessary chemicals for those reactions to proceed. That's why nutritional supplements are especially important for patients taking thyroid hormone as part of their metabolic regimen. (So, you should make sure your prenatal vitamins include the necessary amounts of B-vitamins.)

Exercise is an essential part of the protocol. You do not say what you are doing, but even simply walking for periods of time during the day is helpful. As your metabolism improves, your "tolerance" for exercise will increase, and your ability to experience a "training effect" will return. Patients who are hypometabolic due to inadequate thyroid hormone regulation of gene transcription are not able to get the "training" benefits that people with normal thyroid hormone regulation do from exercise. These patients can exercise, but must be sure not to overdue. Your ability to exercise without "flares" or other adverse effects is one indication that your thyroid hormone dosage is working to increase your metabolic capacity. The exercise is the metabolic "demand" that tests the body's capacity. If you begin slowly, to establish what your tolerance is, your ability to progress and increase your exercise is one indicator that you are succeeding in your goal of eliminating fibromyalgia symptoms from your life. You do not say what kind of exercise you do, but I can tell you from experience that if you are fit before you get pregnant, your pregnancy and delivery will go much more smoothly!

February 15, 1999

Question:
Even though this protocol [of Dr. Lowe's] has helped me greatly, I keep having doctors here say this treatment is dangerous, and even though it helps it is only a quick fix and will cause many other nastier problems in the future. I am willing to take the risk just because life was so awful the other way. Can you allay my worries?

Jackie:
Taking the amount of thyroid hormone that is normal for you is not dangerous as long as you know what you must do to support it. You must take the recommended vitamins--as driving your body without giving it what it needs to work is not advisable. And, you must do some form of exercise. You just won't get maximum benefit from the thyroid hormone if you don't take advantage of what it helps you with. Among other things, metabolic rate is related to body composition (muscle burns more energy than fat) and body function (couch potatoes don't burn many calories). So if you want your body to work efficiently, you have to tell it that you want it to--i.e. with both toning and aerobic exercises. (I would recommend Covert Bailey's books on metabolism and exercise.)

Fibromyalgia patients, however, simply don't have what "normal" people have. That is, enough metabolic stimulation or capacity. Dr. Lowe calls his treatment "metabolic rehabilitation"--similar to the "cardiac rehabilitation" that so many people now understand.

The beauty of treatment with an orthomolecular substance such as thyroid hormone is that we know what the harmful effects of too much are--and they are very easy to spot. The only danger would be in not heeding any warning signs of overstimulation. Thyrotoxicosis (or, overstimulation from thyroid hormone) is what can be dangerous, and it is not defined by a TSH level. Overstimulation can be easily detected by monitoring physiological effects and physiological indices such as heart rate.

As for osteoporosis, which is what I assume you mean by "nastier problems in the future"--this is the easiest fear to allay. Ask any of the doctors (those who are worrying you) about the research. If they are honest, they will tell you that the greatest risk factor for osteoporosis, according to the scientific research, is lack of weight-bearing exercise. Lack of such exercise allows and encourages decreases in bone density. As a result, fibromyalgia patients--who are not able to exercise--would be more prone to osteoporosis. Taking thyroid hormone allows such patients to now perform weight-bearing exercises, and thus can encourage bone density increase. Thyrotoxicosis, however, can be considered a risk factor for decreases in bone density. Again, the thing to be cautious about is any sign of overstimulation. And you, as an educated patient following Dr. Lowe's protocol, know what to look for and how easy it is to see!

Then there's the problem of heart disease. One of the most documented effects of long term hypothyroidism is atherosclerosis. If you allow hypometabolism to go untreated, your chances of heart disease in the future are greatly increased. I'd say not continuing with Dr. Lowe's treatment would be more likely to cause "nastier problems in the future."

I've been on a supraphysiological dose of Cytomel now for over 5 years. My bone density is 114% of age-matched controls, and 100% of young-normal controls. That's the best it could be!