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Fibromyalgia

by Peter Warmingham

 

About Peter Warmingham

The illustration below is by Burne-Jones. It appears as fig 252 of the book 'Burne-Jones' by Martin Harrison and Bill Waters (ISBN 0 214 65376 5) where it is titled Nude Studies for the attendant figures in 'Authur in Avelon', c. 1809, 13 x 9 1/2; Museo de Arte, Ponce, Peurto Rico.

Introduction
Fibromyalgia is the diagnostic label given to patients meeting the criteria defined in 1990 by the American College of Rheumatology (ACR).

These criteria say that the patient’s symptoms must have been present for more than 3 months, there must be widespread pain distributed both above and below the waist, on both the left hand and the right hand side of the body, and that 11 out of 18 tender points must be present when pressure is applied to them. Tender points hurt when pressed but do not cause pain in any other part of the body, and their approximate locations are shown as little black dots on the drawing opposite.

Diagnostic labels are used by the medical establishment when the underlying cause for the collection of symptoms so described is not understood. For this reason the treatment of fibromyalgia is usually approached symptomatically, that is, on a symptom by symptom basis.

Because the underlying cause is not treated, the patient almost invariably remains unwell and so the prognosis for fibromyalgia patients is usually regarded as being very poor. Furthermore, as the fibromyalgia 'diagnosis' becomes more fashionable, there is a growing risk that people who don't meet the ACR criteria will be incorrectly labelled with fibromyalgia.

An Alternative View of Fibromyalgia

There are, however, a number of alternative views about fibromyalgia. We at Thyroid UK take the view that the set of signs and symptoms attracting the fibromyalgia label represents part of a spectrum of manifestations of a slow metabolism (or hypometabolic state) which in turn is caused, or aggravated, by one or more of the following factors:

    • Under regulation of the metabolism by thyroid hormone.
    • Unhealthy diet.
    • Too little cortisol (adrenal insufficiency).
    • Sex hormone imbalances.
    • Nutritional deficiencies (lack of important vitamins needed for the metabolic processes).
    • Exposure to chemical contaminants (which impede the metabolism).
    • Poor physical fitness (which itself leads to a slow metabolism).
    • Untreated physical problems (which may lead to poor sleep, so inhibiting the metabolism).
    • Troublesome drugs (which impede the metabolism).

The spectrum of manifestations of a slow metabolism also includes chronic fatigue syndrome, M.E. and depression, depending on precisely what effect on any particular individual the slow metabolism has.

Whilst a lack of physical fitness will contribute to a slow metabolism, fitness improvement will not on its own make the patient better if other aggravating factors are still present. Similarly, whilst a thyroid hormone deficiency will contribute to a slow metabolism, simply administering thyroid hormone replacement therapy will not on its own bring about a recovery if the patient still suffers from, say, untreated adrenal insufficiency and tender points, and remains unfit. Only when all the above factors active in a particular individual have been identified and the appropriate adjustments made will the patient recover. Thereafter the patient will only stay well if all the changes made, lifestyle and otherwise, are maintained.

Comparison of the Symptoms of Fibromyalgia and Hypothyroidism

It is always fascinating to hear people labelled with fibromyalgia comparing symptoms with people diagnosed with hypothyroidism and discovering just how similar they are! One of the UK fibromyalgia support groups once circulated a questionnaire one of the questions of which concerned the symptoms that people with fibromyalgia complain of.  Some 105 people responded and between them they reported 89 symptoms. Of these people, some 89 (84.8%) were women and 16 (15.2%) were men.  Now, most of those who suffer from over/underactive thyroids are women. On further examination, 62 of those symptoms are also experienced by people who suffer from hypothyroidism.

The main symptoms of  fibromyalgia that hypothyroid patients also complain of are fatigue, sleep problems, headaches, pains in specific parts of the body, poor memory, depression, irritability, problems with concentration and mental processing, muscles spasms and cramps, feeling cold, etc. One of the main symptoms the fibromyalgia people suffer from but hypothyroid people don’t is widespread muscle pain, but as fibromyalgia and hypothyroidism are two different clinical manifestations of a slow metabolism then some differences in symptoms are only to be expected. The full list of reported fibromyalgia symptoms are listed in Table 3 which can be found at the end of this article.

It is not hard to conclude that one of the main differences between the two groups is that fibromyalgia sufferers are more likely to come back with ‘normal’ blood test results and therefore not offered thyroid hormone treatment.

Historical Perspective

As much interesting historical information can be found at www.thyroidresearch.com only a brief overview will be provided here. Before doctors learnt what the thyroid gland does, people suffering from what we now recognise as hypothyroidism developed mysterious symptoms and the more severely affected died. In 1877 a physician named William Ord noticed during postmortems that some patients had shrunken thyroid glands. Then in 1892 a brilliant doctor, Dr Murray, realised that the patients with a shrunken thyroid gland had suffered from particular symptoms such as fatigue and intolerance of cold before they died. This gave him the idea of treating patients presenting those particular symptoms with sheep’s thyroid gland extract. To his amazement these patients recovered and the treatment for hypothyroidism was thus discovered. Eventually pharmacists learned how to desiccate pig’s thyroid in such a way that all the hormones contained within were preserved intact and for many years after that this was the only available treatment for underactive thyroids.

However, as there was no laboratory test available for hypothyroidism doctors had to rely solely on the close observation of the patient’s signs and symptoms. There followed numerous attempts to devise a laboratory test, all which all had to be abandoned because they didn’t work. Eventually a technique for measuring the concentration of the various thyroid hormones in the blood stream was devised which, in spite of its limitations, was adopted for routine clinical use in the late 60’s. At the time many doctors were very unhappy about the new test but they had their expertise at diagnosis using clinical signs and symptoms to fall back on. The impact on their patients was thus minimised but only for as long as they remained in practice. As these experienced doctors retired they were gradually replaced by younger doctors who were increasingly reliant on the blood tests rather than the signs and symptoms for the diagnosis of hypothyroidism.  Eventually these younger doctors came to place more reliance on the blood tests than on the patient’s signs and symptoms.  It is interesting that that we now have a rise in ‘modern’ illnesses such as Chronic Fatigue Syndrome, Fibromyalgia and M.E.

In parallel with the search for a laboratory test, bio-chemists strived for years to reproduce the thyroid hormone molecule in the laboratory. After a tremendous struggle they eventually managed to produce a synthetic version of the T4 molecule which we know in the UK as Thyroxine (Synthroid in the USA) but no clinical trials were performed to check the efficacy of Thyroxine relative to desiccated pig’s thyroid extract. In spite of this, Thyroxine rapidly became the accepted treatment for hypothyroidism and by 1985 desiccated thyroid extract was almost completely unused. However, whilst some people do get better on Thyroxine, many don’t.

Why The Alternative View Is Rejected By Fibromyalgia Support Groups

Unfortunately, the idea that thyroid deficiency might be involved in fibromyalgia is strongly rejected by many fibromyalgia support groups in the UK. Possible reasons for this can be seen from a brief consideration of what typically happens when fibromyalgia patients are given a blood test for thyroid function and perhaps a trial of thyroid hormone is offered.

Taking the blood test first, the results will all too often come back ‘normal’ in spite of the presenting symptoms. As explained above, modern doctors often tend to regard the blood test result as ‘final’. It is not generally appreciated that the blood test results do not always correlate well with the patient’s symptoms or that the levels in the bloodstream do not always reflect those in the cells of metabolically active tissues where the thyroid hormone is actually needed. Also, whilst hypothyroidism, like hyperthyroidism, may come on very slowly and insidiously, it sometimes appears that the doctor thinks that the patient suddenly becomes unwell when the hormone levels move just outside the reference levels. If the result is just within the reference range the patient may well be told there is nothing wrong but if the reading is a little outside the doctor may then consider the possibility that there might be a thyroid problem. Obviously, the patient will only be offered a trial of thyroid hormone therapy if the blood test result does not lie within the ‘normal’ range.

The next problem may be encountered when a trial of thyroid medication is offered. It is generally assumed that Thyroxine (synthetic T4) is the ideal medication for hypothyroidism, and that the correct dose is either 100mcg per day or that which brings the TSH levels back to mid range. Unfortunately, only a few patients do well on Thyroxine, and there are alternative medications they may well do better on but are less likely to be offered. Furthermore the ideal dose is the one at which the patient actually feels well again and this may well be more like 200 mcg of Thyroxine, a dose which may well take the TSH levels nearer to or beyond the lower end of the reference range![1]

Another problem likely to be encountered if mild hypothyroidism has been present for a significant length of time is that of adrenal insufficiency. One of the consequences of this condition is a reduced ability to convert T4 into T3, the active form of the hormone and the one the metabolically active cells in the body actually require. Hence if the adrenal insufficiency is not recognised and treated, the trial of thyroid medication using T4 only is likely to fail. The blood T4 levels will simply rise to thyrotoxic levels making the patient feel worse whilst the cells remain starved of the T3 they need.

Again, as pointed out earlier in this article there may be factors other than the thyroid hormone deficiency contributing to the hypometabolic state which are not being addressed.

Taking all these factors together it is perhaps understandable that when

    1. the blood tests keep coming back ‘normal’ and it is not appreciated how unreliable they are,
      and
    2. people don’t get better on a six week trial of Thyroxine (100mg/day),
      and
    3. a reduced ability to convert T4 into T3, where present, is not recognised and taken into account in the treatment protocol,
      and
    4. the other factors contributing to the slow metabolism are not identified and addressed,

the view that fibromyalgia has nothing to do with thyroid hormone deficiency will be reinforced.

How Many People Labelled With Fibromyalgia Can Recover Their Health?

Dr John Lowe has been researching and treating fibromyalgia for over 15 years, sometimes using a treatment he calls ‘Metabolic Rehabilitation. When he looked back through his records he found that of his fibromyalgia patients [2]:

  • 44% had evidence of central hypothyroidism due to problems in the pituitary and hypothalamus glands which in turn cause the thyroid gland to produce the wrong amounts of thyroid hormones.

  • 12% had evidence of primary hypothyroidism resulting from problems in the thyroid gland itself.

  • 44% had normal results when given an initial thyroid function test but showed all the signs and symptoms of hypothyroidism.

Dr Lowe found that the 56% of his fibromyalgia patients with abnormal blood test results (i.e. those with central or primary hypothyroidism) failed to recover when given conventional treatment with Thyroxine (T4) only. However, 91% of this group recovered when given desiccated thyroid extract (e.g. Armour Thyroid) or synthetic T4/T3 combinations in large enough doses to suppress their TSH levels below the normally accepted reference range. In fact the effective dose was usually the equivalent of the 200 to 400mg of T4 that hypothyroid patients used without harm throughout most of the 20th century.

Of the remaining 44% of fibromyalgia patients with normal blood test results but showing all the signs and symptoms of hypothyroidism:

  • 75% of this group recovered when treated with T3 plus metabolic rehabilitation (aerobic exercise plus treatment of trigger points, etc). Dr Lowe concludes that these ‘euthyroid’ patients suffer from what is known as thyroid hormone resistance.
  • The other 25% of this group failed to respond to treatment. Dr Lowe concludes that the hypothyroid-like signs and symptoms of hypothyroidism presented by these patients result from physical processes not directly related to hypothyroidism.

These results are summarised in Table 1 below.

Table 1


Thus Dr Lowe was able to reduce the symptoms of some 85% of his fibromyalgia patients to, or beyond, the point where they no longer satisfy the ACR criteria for fibromyalgia.

Has Anybody Corroborated These Results?

Those familiar with Dr Jacob Teitelbaum’s treatment protocol for fibromyalgia will be aware that the treatment of thyroid dysfunction plays a major part. Dr Teitelbaum carried out a double blind study [3] on this protocol in which 38 people were given active treatment and 33 placebo treatment. In the active group,18 were given Synthroid (the American equivalent of Thyroxine) and 15 Armour Thyroid (natural desiccated thyroid), hence thyroid replacement was used in 33 of the 38 active treatments.

The results of the study, which show that thyroid disease plays a big part in the treatment of fibromyalgia, M.E. and chronic fatigue syndrome, were as follows:

Table 2 – Results of study into
Dr Teitelbaum’s Fibromyalgia Treatment Protocol

 

Patient Symptoms
After Treatment
Active (Treated for Thyroid) Group Placebo (Not Treated) Group
Much Better
16
3
Better
14
9
Same
2
11
Worse
0
6
Much Worse
1
4


All 38 of the active group were also put on multivitamins, confirming that nutritional deficiencies need to be addressed too.

What Should I Do Now?

The steps you might consider taking are as follows:

  1. Find out as much as you can about the link between fibromyalgia and hypothyroidism by reading books and this website (further information can be obtained via Anne Crashley, 25 Linsdale Gardens, Gedling, Nottingham NG4 4GY, Tel 07880 804004).
  2. Review the symptoms of hypothyroidism to see how many you may have.
  3. Check your Basal Temperature as discussed on this website.
  4. Try discussing your concerns about your health with your GP (if you are a little nervous about this you may want to consider asking someone who knows you well, preferably since before you became ill, to attend the consultation with you), and see if he will agree to give you thyroid function and adrenal profile tests. If not, you can always order salivary adrenal profile tests and/or salivary thyroid tests through Red Apple and/or thyroid blood tests and/or urinary thyroid function tests through Genova Diagnostics via Thyroid UK or through a private doctor/practitioner. Note that the urinary thyroid function tests have been shown to correspond much more closely to the patient’s symptoms than do the results of the blood tests for thyroid function.
  5. If you do have a significant number of the symptoms of hypothyroidism and either your basal temperatures are coming in below 36.5ºC (97.5ºF) or your thyroid function test indicates possible hypothyroidism, you could try approaching your GP for a trial of thyroid hormone replacement therapy. If he won’t agree to this, you could always consider seeing one of the private doctors on the TUK list, or treating yourself with thyroid glandulars.
  6. You will also need to consider if you have the added problem of adrenal insufficiency. The signs of this include abnormal pupilliary responses when light is shone into your eye, postural hypotension, etc. If you do have adrenal insufficiency this will need to be treated with low dose cortisol or adrenal glandulars.
  7. Think about the other factors which contribute to a slow metabolism, i.e., diet, minerals and vitamins, unhelpful drugs which interfere with the absorption of thyroid hormones, sleep problems, other untreated physical problems, exercise to tolerance, etc. You will find much useful information about this in the books recently published by Dr Barry-Durrant Peatfield and Dr John Lowe
  8. Above all, you will need to be patient. You may have been unwell for a long time and it could take some time to recover. Also you may need to try different combinations of thyroid medications before you hit on the one that is right for you.

-------- This article © 2004 Peter Warmingham All rights reserved --------

Footnotes:

[1] A D Toft - Endocrine Clinic, Royal Infirmary, Edinburgh, UK
[2] Dr John Lowe - http://www.drlowe.com/geninfo/clarify.htm
[3] Journal of Chronic Fatigue Syndrome, Vol. 8 (2) 2001.  “Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia - A Randomized, Double-Blind, Placebo-Controlled, Intent-To-Treat Study by Jacob E. Teitelbaum, MD; Barbara Bird, MT, CLS; Robert M. Greenfield, MD; Alan Weiss, MD; Larry Muenz PhD and Laurie Gould, BS