Fibromyalgia, Hypothyroidism, Thyroid Hormone Resistance

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The Metabolic Treatment
of Fibromyalgia

by Dr. John C. Lowe
Readers' Comments

Your Guide to
Metabolic Health

by Dr. Gina Honeyman-Lowe & Dr. John C. Lowe


Order Your Guide to Metabolic Health
by Dr. Gina Honeyman-Lowe & Dr. John C. Lowe

More Recent 2003 Newsletters

April 18, 2003
News from the Center for Metabolic Health
Dr. John C. Lowe & Dr. Gina Honeyman-Lowe

New Items:

NEWS ITEMS

1. At Last: Your Guide to Metabolic Health to be Shipped!
2. Thyroid Hormone Products: Which Have Potency Problems?
3. Trigger Point Therapist Referral Network

At Last: Your Guide to Metabolic Health 
to be Shipped in Two Weeks!

In a couple of weeks, those who’ve ordered Your Guide to Metabolic Health will begin receiving them. If you’re thinking of ordering a copy, April 20th is the cutoff point for the discounted price of $17.95. The full cost of the book after that time will be $24.95. By ordering now, you’ll get a $7.00 discount. In addition, if you order before the 20th, we’ll send you a packet of the four most requested articles we’ve published. The articles are reprinted as booklets. McDowell Publishing Company usually charges $20.00 for the set, but you’ll get them at no charge.

Our main purpose in writing Your Guide to Metabolic Health was to help as many people as possible get well. To this end, we packed as much information as possible into its 384 pages, and we designed it to be a user-friendly self-help guide. We expect that the book will help many people get well.

Our efforts to help those who use the book, however, won’t end with their buying it. As useful as we believe the book will be, we anticipate that some patients will need more help. To try and meet their needs, we’ve created an online trouble shooting section. The section is designed to help patients using the book get past obstacles to their full recovery. When your book is shipped, it will contain the web address to the trouble shooting section.

If the trouble shooting section leaves you with problems unresolved, we’ll try to help further by answering your questions at AskDrLowe@aol.com. With the book, you’ll receive word of a code you should include in the subject line of your e-mails to AskDrLowe@aol.com. We’ll give priority to e-mails with the code in the subject line.

Problems with Potency
of Thyroid Hormone Products

I (JCL) began working with patients who were hypothyroid in the late 1980s. To learn about the treatment of hypothyroid patients, I spent a lot of time talking with other doctors about thyroid hormone therapy. I soon learned that most doctors tenaciously held two beliefs that had been shrewdly planted in their minds by the corporation that marketed Synthroid. The beliefs were: (1) the potency of Synthroid tablets was perfectly reliable, and (2) the potency of the tablets or capsules of other products—especially Armour Thyroid—was highly unreliable.

Based on these two beliefs, the doctors dogmatically pronounced that all hypothyroid patients should be treated with Synthroid. The doctors’ pronouncement was thoughtless parroting of a sound bite from the corporation’s marketing campaign—a campaign so effective that Synthroid eventually became the third most-prescribed drug in the U.S.

In my view, the doctors who parroted the Synthroid marketing hype should feel shame; they allowed themselves to be duped by a sales campaign for a product that was—and still is!—no more reliable than any other thyroid hormone product. In previous publications, Mary Shomon and I have cited the FDA evidence for Synthroid’s lack of reliability.

Of course, Synthroid isn’t the only thyroid hormone product with reliability problems. In our experience, no brand of thyroid hormone is especially reliable. By this, we mean that fairly often, patients find that the potency of the thyroid hormone products they’re taking is lower than the label states.

In our experience, the reliability problem has been worse with products from compounding pharmacies, but the problem is also common for the products of large pharmaceutical companies. It appears to us, then, that all thyroid hormone products are highly vulnerable to influences that reduce their potency. Accordingly, no claim that a product has superior reliability is legitimate.

If you’re new to the use of thyroid hormone, and you’re up to a dose that should be working for you, but you’re not benefiting from it, be sure to let your doctor and your pharmacist know. The dosage range that’s safe and effective for most patients is between 2-to-4 grains (120-to-240 mg) of desiccated thyroid. The equivalent dosage range for T4 is 200-to-400 mcg (0.2-to-0.4 mg). If you’re not improving with this dosage range, you may have thyroid hormone resistance, or the potency of the tablets or capsules you’re using may be lower than what’s stated on the label.

If your thyroid hormone product was prescribed, the bottle containing the pills or capsules will have a batch number. Your pharmacist will probably replace your thyroid hormone tablets or capsules with others from another batch. If you’re using an over-the-counter product such as Nutri-Meds desiccated thyroid, the bottle won’t have a batch number, but you can ask the company to replace the capsules or tablets your currently using.

If thyroid hormone has effectively relieved your hypothyroid or thyroid hormone resistance symptoms, but some of your symptoms have reappeared, you should consider whether the capsules or tablets your presently using have a lower-than-stated potency. You should let your doctor and pharmacist know the symptoms that have recurred. It will also help to have objective evidence, such as a decreased basal body temperature. Your doctor may find that your Achilles reflex that had become normal with thyroid hormone therapy has become slow again. If your TSH level was within the reference range, it may now be much higher now. And if your free T3 level was within the reference range, it may be much lower now. (This is a rare time during treatment when thyroid function testing can actually be of help.)

Clearly, all thyroid hormone products occasionally have potency problems. Because of this, it’s important for patients to stay vigilant for signs that the potency of the capsules or tablets they’re taking isn’t consistent.

Trigger Point Therapist Referral Network

We often hear patients say doctors have told them there is no effective treatment for myofascial pain, and that the patients just have to learn to live with it. The doctors’ statements are patently false. Most patients with myofascial pain can overcome it, as long as they find practitioners trained and skilled at trigger point myofascial therapy.

It’s recently become much easier to find such a practitioner. A few weeks ago, we received notice of the new referral service of the National Association of Myofascial Trigger Point Therapists (NAMTPT). Through the service, patients with myofascial pain and dysfunction can find therapists certified by NAMTPT.

Certified myofascial trigger point therapists are educated and trained to accurately find the source of myofascial pain and to effectively relieve it. A small percentage of practitioners in other health care professions are good at myofascial trigger point therapy. But certified myofascial trigger point therapists are the only practitioners who exist strictly to provide the public with effective myofascial trigger point therapy.

If your doctor has told you there is no effective treatment for myofascial pain, and that you’ll have to live with it, disregard the information as false. Then contact the NAMTPT referral service. They will help you find a certified therapist who can show you that in fact you don’t have to live with myofascial pain. After you experience the relief, please let your doctor know. And be sure to give him or her the contact information for the referral service. Perhaps he or she will refer others to the service so that they, too, can get relief from their myofascial pain.

Trigger Point Therapist Referral Network
www.MyofascialTherapy.org
info@myofascialtherapy.org
1 (800) 845-3454


February 24, 2003
News from the Center for Metabolic Health
by Dr. John C. Lowe & Dr. Gina Honeyman-Lowe

New Items:

NEWS ITEMS
1. Dr. Honeyman-Lowe & Dr. Lowe to Speak in London
2. Do You Have Symptoms of Hypothyroidism or Thyroid Hormone Resistance?
3. Foreword to Your Guide to Metabolic Health Now Online
4. Variations in the COMT Gene: The Basis of Pain in Fibromyalgia?


London Conference is on Saturday 25th October.

Lyn Mynott, Chair, Thyroid UK has booked us to speak at a conference in Euston, London, UK on Saturday, October 25, 2003. We're especially excited about the conference because Dr. Barry Durrant-Peatfield will also be speaking. We'll soon post a review of his new book, "The Great Thyroid Scandal and How to Survive It," with information on how to order a copy.


Do You Have Symptoms of Hypothyroidism
or Thyroid Hormone Resistance?


People have asked us many times to provide a list of the symptoms of hypothyroidism and thyroid hormone resistance. We now have a list of the 69 most commonly reported symptoms. If you're curious about whether you have any, or how many you have, here's the link to the page.


Foreword to Your Guide to Metabolic Health
by Vicky Massey, LMP, Now Online


Finally, our new book "Your Guide to Metabolic Health" will be available for shipping at the end of next month. We wrote the book to help patients fully overcome their symptoms of slow metabolism—regardless of whether their diagnosis is fibromyalgia, chronic fatigue syndrome, hypothyroidism, or thyroid hormone resistance.

Since "Your Guide to Metabolic Health" is a self-help book, it's entirely appropriate that Vicky Massey, LMP wrote the Foreword. She got herself well with minimal help from her doctor, and in her Foreword, she explains how she did it.

After recovering her health, Vicky quickly moved forward in life. She went back to school and became a licensed massage practitioner. She also became an active patient advocate. She speaks on metabolic rehab to many groups, letting patients know that they no longer have to stay ill.

Vicky is the exemplary model of someone with the courage to take charge of her own health and get well. She's truly an inspiration! We felt it fitting that we share her Foreword to the book with everyone. You can read it at the publisher's website:


Variations in the COMT Gene:
The Basis of Pain in Fibromyalgia?


University of Michigan researchers recently identified a pain gene. It's called the "COMT gene." Based on their studies, they propose that variations in the gene are responsible in part for how sensitive people are to pain.
[1]

Research Results: Cells use the COMT gene's code to produce a particular enzyme called "COMT." In our bodies, the COMT enzyme breaks down the nerve-transmitting chemical called dopamine. Dopamine suppresses the production of endorphins, which are morphine-like chemicals that powerfully suppress pain perception. When the COMT enzyme is working well, it lowers our dopamine level. When our dopamine level drops far enough, we produce endorphins. With more endorphins, we perceive less pain.

The COMT gene has two components: one inherited from one's father, the other from one's mother. Each of the two components carries a code. Each code tells the cell to incorporate a specific amino acid  into the COMT enzyme during its production.

The researchers found that in some people, both codes of the COMT gene dictate that cells incorporate the amino acid valine into the COMT enzyme. We can symbolize their two-component COMT gene like this: val/val. The people with the two valine codes had high pain tolerance. The study showed that the people's brains had high levels of endorphins. The assumption is that in these pain-tolerant people, the COMT enzyme (containing its two valine amino acids) rapidly breaks down dopamine. The reduced dopamine level allows the endorphin level to rise, and this renders the people fairly insensitive to pain.

The researchers also found that some people had a variation of the val/val COMT gene. In these people, one code of the COMT gene dictates that cells incorporate the amino acid valine into the enzyme. The other code, however, dictates that cells incorporate another amino acid, methionine, into the enzyme. We can symbolize their COMT gene this way: val/met. These people had moderate pain sensitivity—more than those with two valines in the enzyme. The COMT enzyme with a valine and a methionine in its structure was three-to-four times less active than the enzyme with two valines. Presumably, in these people with moderate pain, the COMT enzyme leaves more dopamine in the body. As a result, their endorphin levels remain lower, and they are more sensitive to pain.

The researchers found that in a third group of people, both codes of the COMT gene dictate that cells incorporate only the amino acid methionine into the enzyme. Symbolically, their gene looks like this: met/met. With two methionines incorporated into the COMT enzyme, its activity is extremely low. Dopamine levels in the body remain high, and endorphin levels low. The low endorphin levels make the people highly sensitive to pain.

It's important to note that the researchers aren't arguing that the gene is the only thing that determines pain sensitivity. They acknowledge that many other factors influence our pain sensitivity, and the gene is only one of the factors.

Relevance to Fibromyalgia: Lauran Neergaard of the Associated Press commented on the researchers' aim: It is to understand how genetics and other factors interact to make some people more susceptible to painful disorders—"like the joint-afflicting fibromyalgia that tends to strike women," she wrote.
[2] Of course, fibromyalgia is not a "joint-afflicting" problem. In fact, we used to distinguish fibromyalgia from joint disorders by calling it "non-articular rheumatism." Regardless, a question naturally arises from this gene research: Do fibromyalgia patients have the val/met or met/met variation of the COMT gene? Is one of these variations the basis of fibromyalgia patients' chronic pain?

It will be fascinating to find what later research turns up. But at this point, the gene study results don't indicate that the COMT gene is involved in fibromyalgia. If the pain of fibromyalgia were due to a met/met code in the gene, fibromyalgia patients should have high dopamine and low endorphin levels.

Researchers have measured the breakdown product of dopamine in fibromyalgia patients' cerebrospinal fluid (the fluid in which the brain and spinal cord float). But they didn't find a high level. Instead, the level was low.
[8]

In one study, fibromyalgia patients' blood endorphin levels were lower than in depressed patients.
[3] But in two other studies, researchers found normal blood levels of endorphins in fibromyalgia patients.[4][5] A study of the endorphin levels in fibromyalgia patients' cerebrospinal fluid showed normal levels.[6] Other researchers found that rather than low endorphin levels in the fluid, fibromyalgia patients' levels were higher than normal. These researchers concluded that fibromyalgia patients' pain isn't caused by low endorphin levels.[7]

The available studies, then, don't show that fibromyalgia patients have the high dopamine and low endorphin levels dictated by the val/met or met/met variation of the COMT gene. Hence, it's unlikely that either of the gene variations is the basis of the chronic pain of fibromyalgia.

References

[1] Zubieta, J.K., Heitzeg, M.M., Smith, Y.R., et al.: COMT val158met genotype affects mu-opioid neurotransmitter responses to a pain stressor. Science, 299(5610):1240-1243, Feb. 21, 2003.

[2] Neergaard, L.: Gene Helps Determine How Much You Hurt. Associated Press, Feb. 21, 2003.

[3] Panerai, A.E., Vecchiet, J., Panzeri, P., et al.: Peripheral blood mononuclear cell beta-endorphin concentration is decreased in chronic fatigue syndrome and fibromyalgia but not in depression: preliminary report. Clin. J. Pain, 18(4):270-273, 2002.

[4] Hamaty, D., Valentine, J.L., Howard, R., et al.: The plasma endorphin, prostaglandin and catecholamine profile of patients with fibrositis treated with cyclobenzaprine and placebo: a 5-month study. J. Rheumatol. Suppl., 19:164-168, 1989.

[5] Yunus, M.B., Denko, C.W., and Masi, A.T.: Serum beta-endorphin in primary fibromyalgia syndrome: a controlled study. J. Rheumatol., 13(1):183-186, 1986.

[6] Vaeroy, H., Nyberg, F., and Terenius, L.: No evidence for endorphin deficiency in fibromyalgia following investigation of cerebrospinal fluid (CSF) dynorphin A and Met-enkephalin-Arg6-Phe7. Pain, 46(2):139-143, 1991.

[7] Vaeroy, H., Helle, R., Forre, O., et al.: Cerebrospinal fluid levels of beta-endorphin in patients with fibromyalgia (fibrositis syndrome). J. Rheumatol., 15(12):1804-1806, 1988.

[8] Russell, I.J., Vaeroy, M., Jabors, M., and Nyberg, F.: Cerebrospinal fluid biogenic metabolites in fibromyalgia/ fibrositis syndrome and rheumatoid arthritis. Arthritis Rheum., 35:550-556, 1992.


January 13, 2003
News from the Center for Metabolic Health
by Dr. John C. Lowe & Dr. Gina Honeyman-Lowe

New Items:

1. Our Article on Sleep for Sleep-Study Technologists' Publication
2. Our Treatment Approach: Widely Misunderstood
3. For Most People, Moderate Caffeine Use Does Not Increase Pain


Our Article on Sleep for Sleep-Study Technologists' Publication

A2Zzz is the publication of the Association of Polysomnographic Technologists. The technologists are the ones who do sleep studies (polysomnograms) of patients in sleep labs. 

Editor-in-Chief Theresa Shumard asked us to write an article for the publication on the relation of sleep to fibromyalgia. She also asked us to tell the technologists what they can do to help their fibromyalgia patients with their pain. She wrote of the technologists: "They see many patients who suffer from chronic fatigue syndrome and fibromyalgia. It is very frustrating to the technologists because many times the patients feel despair over the pain and have very poor sleep. If they are treated in the sleep lab for sleep disorders, such as sleep apnea syndrome, and treatment with CPAP [continuous positive airway pressure] helps, the patients still suffer from pain. Maybe there are things you can suggest technologists tell their patients."

We worked on the article over the holidays, and it's now in Theresa's hands awaiting publication. In the article, we advised technologists to tell patients about two important research findings. First, fibromyalgia is a set of symptoms of hypothyroidism or thyroid hormone resistance complicated by other metabolism-impeding factors. Second, most patients can now be freed from the symptoms by integrated metabolic therapies in the process we call metabolic rehabilitation. 

We also advised technologists to give their patients the long list of sleep-improving methods from the sleep chapter of our new book, Your Guide to Metabolic Health. Theresa was pleased with our article and suggested that we write again for the A2Zzz.


Our Treatment Approach: Widely Misunderstood

Many patients, doctors, and researchers alike hold false beliefs about our treatment approach. Two such beliefs are that our approach involves nothing more than the use of the thyroid hormone T3, and that our patients use sustained-release T3.

The truth is that our treatment program is holistic. It involves practically everything humans must do if they're to be well. The treatment includes a wholesome diet, nutritional supplements, exercise to tolerance, cessation of metabolism-impeding drugs, and various hormone therapies individual patients need. Our approach also includes physical treatments for spinal disorders, trigger points, and other nervous system and musculoskeletal problems.

Most of our patients, of course, use thyroid hormone. It's important to note, however, that despite a widespread misconception, only a small percentage use T3 alone. Studies we conducted showed that more than 50% of fibromyalgia patients had either primary or central hypothyroidism when they first consulted us. Descriptions of the studies are published online. According to recently revised lab standards, however, probably 75% of the patients actually had hypothyroidism.

Our hypothyroid patients begin treatment with desiccated thyroid. They always use it within the context of a comprehensive regimen of metabolic rehabilitation—a highly systematic program involving the use of integrated metabolic therapies. That our hypothyroid patients begin treatment with desiccated thyroid means, of course, that only a minority of our patients must use T3 alone. Hence, it's grossly inaccurate to characterize our approach as solely the use of T3. 

It's equally inaccurate to characterize our approach as the use of sustained-release T3. We've published widely that our patients with thyroid hormone resistance use plain T3, not sustained-release T3.

We know at least two reasons why many people mistakenly believe our patients use only T3 and that the T3 they use is sustained-release. One reason is people's tendency to abbreviate complex matters in their thinking. It's easier for people to think "T3" rather than "integrated metabolic therapies within a process called metabolic rehabilitation."

The other reason for the mistaken beliefs is inaccurate statements by some authors of articles and books. A recent example is Dr. Jacob Teitelbaum's comment on our treatment approach in his book "From Fatigued to Fantastic." Referring to thyroid hormone therapies, he wrote, "Another approach, used by the research center of Jon Lowe, D.C., [sic] . . . is to use the T3SR [sustained-release T3] only in the morning."
[1,p.46]

Our website contains information that makes perfectly clear what our treatment approach is and is not. Many patients and doctors understand it because they take the time to read and comprehend the information on drlowe.com. Others, however, don't read it, and as a result, they don't understand our approach. Unfortunately, some of these people describe in print what they think our approach is without bothering to check the accuracy of their thoughts. Their doing so imposes on us the considerable chore of correcting their mistakes.

Reference

[1] Teitelbaum, J.: From Fatigued to Fantastic, 2nd edition. New York, Penguin Putnam Inc., 2001.


For Most People,
Moderate Caffeine Use Does Not Increase Pain

Fibromyalgia support group leaders and doctors often advise patients to stop using caffeine. The reason the advisors give is that caffeine increases pain. Pain, of course, is the main symptom of fibromyalgia, and if caffeine worsens pain, fibromyalgia patients would best stop using it. 

But we don't believe that patients, except rare ones, should stop using caffeine. We counsel patients who don't have a particular problem with caffeine to use it prudently and shamelessly. Most fibromyalgia patients who use caffeine will tell you that a moderate amount improves their mood, reduces their fatigue, and warms them up a bit. And if it affects their pain at all, it modestly reduces it. 

Caffeine can potentially worsen some people's pain. Using it to excess may do so. And heavy caffeine users are likely to have pain at the base of the skull for a few days when they abruptly stop using it. 

In addition, some women—certainly not most—have breast pain that's associated with their caffeine use. Researchers recently reviewed reports of breast pain published between 1975 and 2002. A few of the publications reported that using caffeine was associated with breast pain. It's important to note the solution the researchers recommended. It wasn't total abstinence from caffeine. Instead, it was "caffeine reduction."
[1] Similarly, Drs. Michael Murray and Joseph Pizzorno, in their "Textbook of Natural Medicine," explained how caffeine might contribute to fibrocystic breast disease. In their treatment recommendations, they didn't write that affected women should totally and forever stop their use of caffeine. Instead, they wrote, "All methylxanthines [such as caffeine] should be eliminated until symptoms are alleviated. They can then be reintroduced in small amounts."[2]

Caffeine, then, can increase some patients' pain: those who use too much, those who abruptly stop using it after heavy use, and an occasional woman with susceptible breast tissue. Otherwise, caffeine does not increase pain. The truth is exactly opposite from what some fibromyalgia support group leaders and doctors tell patients—that is, using moderate amounts of caffeine usually reduces pain. It's for that very reason that many pain-killing medications contain caffeine. Thus, group leaders and doctors who advise all patients to abstain from using caffeine are dispensing patently bad advice. Most patients will fare best by rejecting it.

Anyone who doesn't believe our point of view on caffeine should go to PubMed. The web address is: http://www.ncbi.nlm.nih.gov/PubMed/ When the page comes up, type in this string of keywords: "caffeine and pain and review". Three pages of reviews of published studies will come up. These reviews will give you a overview of what studies have revealed about pain and caffeine. By typing in "caffeine and pain" (dropping "and review"), hundreds of abstract of studies of pain and caffeine will come up. Read a good sample of the abstracts, and, if you're an evidence-based thinker (which is to say rational) form your own opinion based on what you read.

Some studies are fascinating. Consider one on mood, pain, and caffeine. Researchers report that people who have a positive mood experience less pain.
[3][4][5][6] Caffeine improves mood. Because of this, researchers speculated that the improved mood from caffeine accounts for the chemical's pain-killing effect. To test the idea, they conducted a study that factored out the effect of mood on pain relief. They found that two doses of caffeine (65 mg and 130 mg) had a direct pain-killing effect that wasn't caused by improved mood. They also found that the pain-killing effect wasn't due to the relief of caffeine-withdrawal pain.[7] Results of this study, like those of hundreds of others, contradict the belief of those who claim that caffeine increases most people's pain. 

We don't know where some support group leaders and doctors came by the belief that caffeine increases fibromyalgia patients' pain. But two things are clear: The belief is false, and to continue believing it, group leaders and doctors will have to stubbornly ignore overwhelming contrary scientific evidence. Regrettably, we've found that presenting the evidence to most of them does no good. Often it spurs them on to emotional protests against caffeine use. This shows the truth of an old saying: "A closed mind is like the iris of the eye: The more light you shine on it, the tighter it closes."

References

[
1] Norlock, F.E.: Benign breast pain in women: a practical approach to evaluation and treatment. J. Am. Med. Womens Assoc., 2002 Spring;57(2):85-90, 2002.

[
2] Murray, M. and Pizzorno, J.: Textbook of Natural Medicine, 2nd edition.

[
3] 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.

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

[
5] 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.

[
6] 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.

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

© 2003 John C. Lowe. All rights reserved. This Center for Metabolic Health, LLC Email Newsletter may be copied and distributed subject to three conditions: (1) All text within the full document or any section copied must be copied without modification with all pages included. (2) All copies must contain the following copyright notice: "© 2003 John C. Lowe" (3) Neither this full document nor any section of it may be distributed for profit.

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