Thyroid again

Information about treating thyroid in the CFS/ME patient can be confusing. Perhaps the PA will be told that the treatment needs to be temporary, while at the next moment he is told that it is for the lifetime of the patient. Perhaps the PA will read that the hormone therapy will lose its effectiveness over time and there will be a back-siding, while at another time he will be told that the patient's need for thyroid hormone will diminish over time. These are radically different pieces of information and yet they are both there for consideration. It is confusing isn't it? Certainly one consistent idea it that the adrenals need to be supported when doing thyroid hormone replacement. This area of adrenal support is another nightmare, as it is difficult to measure adrenal function and so many doctors do not even believe in adrenal fatigue. There is no way to know which adrenal support is doing it's job and how well. Speculation is at its highest in this area of treatment. For instance my daughter takes a flash frozen live cell product from Douglas Labs, which is supposed to support the adrenals and help them heal. It is a very expensive product and there is no measurable or felt evidence that it provides any support.

Different thyroid hormones and their combinations have different and subtle effects and need to be balanced carefully. Most people with thyroid problems and CFS use Armour Thyroid, a desiccated natural product. However there are many exceptions and some used synthetics and synthetic combinations and others use Cytomel, either in low dose or high dose, depending on the situation. Sometimes a patient can be allergic or have a sensitivity to a thyroid or adrenal medication and get an uncomfortable feeling using it. At other times a hormone might not feel like it is doing any good, and the amount need to be raised. Raising the thyroid hormone to the optimal level is another tricky business. It is a delicate balance to find the zone where the thyroid is doing the most good and yet it is not provoking additional problems, like hyper feelings. It can take some time to get to the optimal level, and feel confident that the patient is really getting the maximum benefit of the treatment. The titrating up of the hormone is a trial and error process that is not without a welter of confusions, counter-indications and misdirections. For instance there are two additionally complicating situations: thyroid hormone resistance and reverse t3 syndrome. Both can be regulated by switching from Armour thyroid to straight t3 - either partially or completely. Any change is thyroid hormone therapy is fraught with ambiguity and a sense of precariousness. Testing of free t3 and free t4 along with antibodies and ferritin levels can give a modicum of direction, but nothing in which you really have complete confidence. There are objective targets to aim at in terms of hormone levels in the blood, but that tells you very little about what is actually in the tissue. For various reasons it is often difficult to raise the free t3 into the upper half of the normal range. This can be for various reasons, and for no reason. Certain thyroid/CFS doctors will discount the tests or ignore them completely, going strictly on patient improvement. If the patient feels better, if the patient's hypothyroid symptoms are diminishing, this is good. If the patient is hyper, this is bad - like that. Some doctors say that thyroid hormone is completely safe for the patient, others say that thyroid hormone therapy can cause osteoporosis and a host of other things. The Patient Advocate has to figure this out on his own. The bottom line in thyroid replacement therapy is that the patient or the Patient Advocate has to educate themselves on the risks and benefits of the treatment and learn all the ins and outs of therapy and work closely with a doctor. This really means that the patient has to use a doctor to guide the patient's own treatment. This is not as radical as in sounds. Every successfully managed type 1 diabetic in the world knows the most about his or her situation and makes all the major medical decisions, working with a good doctor. If the patient relies completely on a doctor in these complex self-managing situations, the patient will end up in the soup.