Chronic Fatigue Syndrome or Hypothyroidism

For about twenty years now I have suffered from ME (myalgic-encephalomyelitis) or CFS (Chronic Fatigue Syndrome) as I believe it is known in the US. During those twenty years I have also been variously diagnosed with Fibro Myalgia, High Blood Pressure, Depression, Anxiety, Vertigo and Stress.

Symptoms

My symptoms have included loss of body hair, thinning head hair, puffy face, hands and feet, swollen ankles, water retention, extreme exhaustion, dizziness, loss of balance, weight gain and an inability to lose weight, very dry flaking skin, headaches and migraines I thought I would die from, bloating, breathlessness, a hoarsening of my voice particularly when more tired than usual, an inability to think properly, confusion, and a consequent inability to speak properly or hold a conversation, slight deafness, loss of confidence, anxiety, suspicion of other people, almost paranoia, mood swings, depression, an awful internal shaking and sometimes shaking hands, and so on and so on.

Visiting the Doctor

Naturally with all these symptoms I visited the Doctor more than I wanted to. Because of the frequency of my visits and the variety of symptoms I came to be very anxious about going to the Doctor because I was sure he would think I was a hypochondriac. Fortunately the Doctor I had was very nice and had also known me when I was well and accepted that I really was ill. After all, who would voluntarily lose their career (earnings of about 50K a year), their partner (a ‘ toy boy ‘ who couldn ‘ t cope with the realities of my illness – can ‘ t blame him for that!), and their social life?

Changing Doctors

When we moved house, from England to Wales in 2001, I signed on with a new Doctor. Unfortunately he didn ‘ t seem to like women very much! At least, he didn ‘ t seem to like me and virtually dismissed me and my symptoms as the problems of ‘ a woman of my age ‘ . I was unimpressed.

My suspicions of an under-active thyroid

A friend of mine suggested, just prior to my move, that I might have an under-active thyroid. I knew nothing of the symptoms of this illness so did some reading on the subject. Reluctantly I revisited my unsympathetic Doctor and suggested this to him. He obliged with a blood test, but the results came back apparently normal, so it was concluded that I did not have an under-active thyroid and therefore did not need treatment.

This same friend was ill for a while and I was not in the best of health so our contacts were infrequent. However, once he was feeling better he contacted me with information relating to the thyroid testing system (of which more later). I read about it and returned to my Doctor, who refused to even think about what I was telling him, on the grounds that my friend was probably ‘ on a misguided mission to cure the ills of the world ‘ . I told you he was unsympathetic!

Moving house again

We had to move house again, three times in two years, which totalling exhausted me and my family and I put my symptoms down to a worsening of CFS. I made new friends in the area, one of whom over the course of a year, noticed changes in my health and demeanour. She said she would lend me a book to read; amazingly it was about thyroid conditions, which I read with interest.

New Doctor

She also suggested that I sign up with her Doctor, which I duly did. I asked if I could have a blood test and was sent to see the Sister in the Practice. Luckily for me she also happens to be the thyroid specialist in the Practice. She suggested a blood test but recommended treatment on the basis of the symptoms I was displaying.

Blood Test Results

My understanding of the blood test is that the ‘ reference range ‘ was established by testing the blood of a number of people. The range (at least here in this part of Wales) is between 10 and 22. In practice this seems to mean to a Doctor that if a patient ‘ s blood test falls within this range s/he is normal.

However, if some of the people originally studied had a result of 10, would they not have a problem if that result changed over a period of time to, say, 20? And likewise if a person ‘ s result was 21 and dropped over time to 14 would they not have a problem? My point being that this reference range is a guide only and does not necessarily mean that if one ‘ s blood test result falls within this range one is ‘ normal ‘ . What is normal for one person is not necessarily normal for another.

Positive Results

Happily for me my new Doctor, although my test result showed that I fell within this reference range (my result was 11) decided that he would treat the symptoms and not the blood test. He initially put me on a low dosage, which after more blood tests, has been increased. I am now on a dosage of 75 mcgs, which is having very positive results indeed.

Chronic Fatigue Syndrome or Hypothyroidism

Obviously after being ill for a very long time it may well take some time for my health to improve to the state where it is normal. I also have to bear in mind that I am twenty years older and so am never going to be as I was then. However, since beginning the medication, about three months ago, my confusion has disappeared, I can follow a thought – mine or someone else ‘ s – to its logical conclusion, I have more energy and do not get that awful exhausted feeling that I cannot, quite literally, move another step. My feet, hands and face are no longer swollen, my ankles are improving too, my very dry flaking skin is not as bad, although so far there hasn ‘ t been any noticeable improvement with my hair. I only occasionally get the dizziness and it is only for seconds – instead of the days it used to be. Many of the other symptoms are improving or disappearing. (I would have been completely unable to write an article prior to the medication being prescribed.) In short, I am feeling a great deal better and am hoping that this will continue.

What happened to clinical diagnosis?

Having read extensively on the subjects of CFS and Hypothyroidism, and after studying reports on the frequency of diagnoses, it seems strange to me that no-one has noticed that as the rise in diagnosis of CFS has occurred there seems to have been an almost corresponding decrease in the diagnosis of Hypothyroidism. I am not saying that all cases of diagnosed CFS are wrong and are actually hypothyroidism, but I have a friend, a daughter and myself who have all been diagnosed with CFS (myself in 1987, my daughter in 1994, and my friend in 1993), and we have all now been re-diagnosed as possibly having an under-active thyroid, all been given treatment, at different levels, and oddly we have all improved in less than three weeks from the beginning of the medication and continue to do so.

In the days before the blood test a Doctor would look at his patient (apparently much can be discerned from appearance with hypothyroidism) and listen to his patient recounting his symptoms. The Doctor usually would ask questions about the patient ‘ s family, as this condition often occurs in families. Obviously s/he would ask questions of the patient to establish that other illnesses were not causing the problem. Following a diagnosis of hypothyroidism, artificial thyroxin would be prescribed and presumably the patient became well.

Diagnosis by an Endocrinologist?

Since the advent of the blood test and new younger Doctors establishing themselves in the system, blood tests seem to be more and more relied upon without the benefit of an additional clinical diagnosis.

If a Doctor relies only on the results of a blood test and does not use his/her own abilities and (supposed) knowledge of the condition, it would appear that the patient is being diagnosed by an unknown Endocrinologist in some laboratory somewhere, who has never met the patient and in fact knows nothing of them, other than the condition of the blood sample supplied to them for a specific test. Why bother with the Doctor in this case? It does not seem very professional of either the Doctor to rely upon just the blood test, or of the Endocrinologist to suppose that s/he knows all when s/he has never met the patient.

Revision of Testing Procedures

During my reading I have discovered that different laboratories test in different ways, and different areas/countries have different reference ranges. Is it possible that some of the people who originally participated in the blood test to establish the reference range were suffering with undiagnosed thyroid conditions? As a layperson it is difficult to find out what medical checks were made on these volunteers.

With such a variable base line it seems to me that any blood test result is also going to be variable, if not unreliable.

Science is good; scientific development improves our lives enormously. But science, or our understanding of it, is never always the only answer. The parameters set for the blood test should never be the sole indicator of whether a patient is suffering from hypothyroidism or not.