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4 Replies
larry - December 9

If you hate long posts- do not read. i think this is worthy of it's own post. ..........This is a very long post but it can help you tremendously. There are 6 components to addressing this syndrome and unfortunately most doctors don't get pass the first stage component. One of the fastest and easiest thing you can do is to read this article and ask your doctor to work with you this.........Are All Chronic Fatigue Syndrome/Fibromyalgia Patients Low Thyroid? …………………..
There is mounting evidence that hypothyroidism is present in the majority of and possibly all Chronic Fatigue Syndrome and Fibromyalgia (CFIDS/FM) patients. The problem is that standard blood testing that consists of TSH, T4 and T3 does not detect it. Thus, many CFIDS/FM patients are erroneously told over and over that their thyroid levels are fine. TSH is secreted by the pituitary in the brain, telling the thyroid to secrete T4, which is not the active thyroid hormone. T4 must then be converted in the body to the active thyroid hormone T3. When T4 and T3 levels drop, the TSH should increase indicating hypothyroidism. This is the standard way to diagnose hypothyroidism. There are, however, many things that result in hypothyroidism but are not diagnosed using the standard TSH and T4 and T3 testing. This method misses thyroid problems with CFIDS/FM patients 90% of the time. ………………………….

First of all, there is clearly pituitary dysfunction in these diseases from a variety of causes, including viruses, bacteria, stress, yeast, inflammation, toxins, pesticides, plastics and mitochondria dysfunction. This results in low normal TSH levels along with low normal T4 and T3 levels. Very few doctors understand the significance of this and incorrectly state that the thyroid is fine. In addition, most Chronic Fatigue Syndrome and Fibromyalgia patients do not adequately convert T4 to the active T3, resulting in low levels of active thyroid hormone and suffer from low thyroid despite having a normal TSH. Also, there is another problem in that T4 cannot only be converted to T3, but it can also be converted to reverse T3, which is inactive and blocks the thyroid receptor. Very few practicing physicians consider this, but it is a major problem. ………………….

There is an evolutionary enzyme that increases the T4 to reverse T3 in times of stress and illness. This worked well for our ancestors because in times of famine it allowed those who had this enzyme to survive. But in our modern society, reverse T3 works against us causing fatigue, difficulty losing weight, brain fog, muscle aches and all the other symptoms of hypothyroidism. Reverse T3 can be increased with chronic illnesses such as CFIDS/FM, yo-yo dieting (often responsible for the quick weight gain after losing weight), stress, heavy metals and infections commonly present in CFIDS/FM. ………………..

Low thyroid not only results in undesirable symptoms, but it also increases the risk of heart disease and cancer. When more extensive testing is done, these patients are so relieved to be shown on paper that their thyroid is truly low and that they can expect to be feeling better soon. There are only a few labs that can accurately measure reverse T3. It is difficult for labs to do and many labs will erroneously indicate normal or low levels of reverse T3. Some doctors that have ordered reverse T3 on patients have found it not to be useful because they are not getting accurate results or they don't know how to interpret the results. In addition, there is also a thyroid resistance syndrome found in these patients, meaning that there may be thyroid in the blood but there is no thyroid effect. This has been discounted in the past, but more and more evidence is surfacing proving that this is indeed a significant problem with these conditions.

The combination of factors present in CFIDS/FM, including pituitary dysfunction, high reverse T3, and thyroid resistance, results in most, if not all, CFIDS/FM patients having inadequate thyroid effect. T4 preparations such as Synthroid and Levoxyl rarely work and Armour thyroid, a pig glandular product, is somewhat better, but definitely not adequate for most patients. The treating physician must know when to use a T4/T3 combination or straight T3. T3 works the best for many of these patients, but Cytomel, a very short acting T3 available at normal pharmacies, is also a poor choice because the varying blood levels cause problems. Compounded timed release T3 is usually the best treatment. …………………

However, to achieve significant improvement, the treating physician must be very knowledgeable about T3 and must realize that when on T3, standard bloods blood test will lead one to dose incorrectly and not obtain significant benefits. Doctors trained on how to use thyroid with CFIDS/FM patients cannot believe how effective it is when used properly. This includes doctors who previously felt that they were thyroid experts and had been using thyroid with CFIDS/FM for a long time. Ultimately, it is the expertise and dosing of the T3 or T4/T3 combinations and the makeup of the medications that determines the patient outcome and success of treatment……….Dealing with the thyroid is just a small part of reversing and curing this syndrome, however it is a fast way to get you stabilized. You also have to consider addressing the neurotoxins in your body as well, a cause of Chronic Fatigue Syndrome/Fibromyalgia. Good luck, you can do it.

 

larry - December 9

sorry about the double posting

 

sjmcdona - December 10

Hi Larry,

I am new to the board and also new to the fibromyalgia diagnosis. Because I am hypoglycemic (and have diabetes in my family), my doctor wants me to see an endocrinologist and have some tests done, including my thyroid. 3 years ago I had my thyroid tested, but it was supposedly normal. What specifically should I ask/tell the endocrinologist to test when checking my thyroid? I have a lot of the classic low thyroid symptoms, and I want to make sure I get tested properly. Thank you!

 

JJ1 - December 11

I would like to know this too. My thyroid levels are always in the normal range. However, my symptoms seem to mimic hypothyroidism more than FMS, imho. When I first got sick, I had self-diagnosed myself (the internet is a dangerous thing,lol) with hypothyroidism and was actually disappointed when I was told that wasn't what I had (since it is treatable).

 

larry - December 11

Sjmcdona- You are at the begining of many years of frustration that can be shortened considerably if you find the right endocrinologist first. Unfortunately 90% of doctors are still not educated to look at the body on a holistic level and they just concentrate on symptoms -thus the reason so many people are puzzled by fibro. IT is very real and very treatable. In addition to looking at the thyroid hormones mentioned above- you need to address the many other underlying conditions and treat them simutaneously. Here is an article on the 6 components to treating fibro. In addition to the hormones mentioned in component 3 - I was tested for ; In addition to the detailed thyroid hormones listed above and the hormones mentioned in component 3 I was tested for ;

Aldosterone. LC/MS/MS, Serum, Angiotensin Converting Enzyme, Cortisol, Free & Total,serum DHEA Sulfate, Homocysteine, cardiovascular, IgG, serum, subclass 1, 2,3,4, heavy metals, blood, arsenic, blood, lead,blood,mercury,bloodNatural killer cell function, FC, Assay, CBC w/Diff & plt, estradiol, FSH, LH, Progesterone,Prothrombin Time, INR, Prothrombin Time PTT, ACTH Plasma, Angiotensin II, Fibrinogen, Fibrinogen Activity, IGF-I, Intergeron-Alpha, EIA, Plasminogen Activ Inhib-1Ag, PAI-1 Antigen, TNF- Alpha, highly senstitive(Tumor Necrosis Factor-Alpha), Thrombotic Marker Panel, Vitamin D,1,25-DI & 25 Hydroxy, Vitamin D,1,25-DI & 25 DiHydroxy, Complete Metabolic Panel, Cardio CRP, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When these hormones are properly treated and balanced, tremendous results can be achieved. However, you must understand all six components--- here is the LONG article-- BTW- I was shocked to find that I have almost all of the infections in component 4- Good luck- This is from the fibro and fatigue center (fibroandfatigue.com) that is treating me........Chronic fatigue and fibromyalgia are complex diseases that involve multi-system disturbances and abnormalities. Because of this complexity, these conditions have been poorly treated by the current medical system in this country. These conditions do not lend themselves to be successfully treated with the eight to fifteen minute visits that address only a portion of the wide spectrum of underlying dysfunctions. Through a more detailed evaluation, all identifiable etiologies contributing to the symptomatology may be appropriately addressed, and when multifaceted treatment is instituted that addresses the entire spectrum of these diseases, truly remarkable success and total cures can be obtained. In general, successful treatment can be viewed in components. Treatment needs to be individualized, components may occur in different order and multiple components are often addressed simultaneously, but these can be broken down as follows. ……………
Component One: Stabilize the patient ………………
This is a component in which pain and sleep disturbances are addressed. This may include the use of, sleep medications, pain medications and antidepressants. This is in general a temporary “stop gap” phase because as the treatment progresses and the underlying problems are addressed, the medications that “mask the symptoms” are no longer needed. Unfortunately, the overwhelming majority of patients are never brought past this stage by their doctors. This is because this component is the limit of training for most doctors, but it really should only be the first step. ...........................
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Componen
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Two: Mitochondrial enhancement.. This component is actually integrated throughout the treatment program and tapered as the patient returns to normal functioning. The mitochondria are the energy producers of the cells and are critical for normal functioning. But they are shown to be poisoned in these conditions, leaving the cells starving for energy. Many things can poison the mitochondria including hormonal deficiencies, toxins and infections. Mitochondria dysfunction may be the common denominator and underlying mechanism that explains the symptoms of CF/FM. In addition to the treatments above to rid the body of the offending agents, specific nutrients can be given to jump start the mitochondria and get the body functioning again. These can also be administered orally or via an intravenous route. ……………………
Component Three: Balance the hormones
There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunction with these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When they are properly treated and balanced, tremendous results can be achieved. .........................
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Componen
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Four: Treat the infectious components
There are multiple infections that either may be the cause of CF/FM or contribute to the dysfunction. Because of the immune dysfunctions, there is often more than one infection that must be addressed. Potential pathogens include a variety of viruses such as Epstein Barr (EBV), Cytomegalovirus (CMV), Human Herpes Virus 6 (HHV6), Enteroviruses, such as Coxsackie, Echo, and Stealth virus. Bacterial infections include intracellular organisms such as Mycoplasma, Chlamydia pneumonia, Borrelia Burgdorferi (Lyme Disease) and Ehrlichia. A number of yeasts such as Candida and parasites must also be evaluated. Infections with many of the above organisms will also further suppress the immunity, often resulting in further infections with other organisms. Thus, many organisms must be evaluated and treated along with an assessment and treatment of the immune system. If a poor immune system is not addressed, successful eradication of the organisms is not likely, even with the most potent treatments. Treatment may be administered with oral medications or via an intravenous route. A combination of IV and oral medication in conjunction with immune modulation is extremely powerful. ....................................

Component Five: Address Unique Etiologies
There are a number of problems that must be addressed in select patients. For instance, some individuals have a coagulation defect that is set off by a chronic infection. This results in the laying down of a fibrin coating on the lumen of the vessel causing impaired oxygen and nutrient transfer. This can result in fatigue, muscle aches and “brain fog”. If suspected, diagnosis requires specialized testing. If not treated, not only are the cells starved for oxygen and nutrients, but it is very difficult to eradicate any infection because they will “hide” in the fibrin coating. Also, if the organism is one that produces neurotoxins, this must also be addressed. These substances can remain in the body and continue to cause symptoms long after the organism that produced them are gone. Special testing and protocols must be done to rid the body of these tiny toxins. ...........

Component Six: Maintenance
Here is where the patient is weaned to just a few core medications and supplements to remain symptom free and maintain their health. Significant recovery or complete resolution of symptoms is the rule rather than the exception when a multifaceted treatment plan is instituted.




 

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