From Susanna Agardy <susannaa@dodo.com.au>:
LABORATORY TESTS IN ME/CFS: ELEVATED INSULIN LEVELS, ETC.
Susanna Agardy
Many ME/CFS sufferers are told at some stage, 'all your tests are
normal' following some basic tests. The myth is confirmed by official
guidelines which state that ME/CFS is to be diagnosed by exclusion,
it is unexplained and there is no point in doing further tests. How
is it then, that I have so many significant abnormal lab. test
results? No doctor has tried to exclude me from the diagnosis of
ME/CFS on the basis of these tests. On the contrary, they have been
regarded as a confirmation of the condition. I am especially
concerned that the CDC confirms that there are no tests worth doing.
My most outstanding tests are as follows:
1. Elevated Insulin Levels. My serum insulin as measured by glucose
tolerance test (GTT) 1hour 20 minutes after ingestion of glucose was
89 mIU/L. (reference range: 0-20) Four and a half hours later it was
33. I heard another sufferer talk about her similar result. Her
doctor had said, 'this is not possible, there must be a mistake'. A
serum insulin test without glucose, some years later, was 21
uU/ml (reference range: 2-10). I have not made a habit of doing the
GTT because the ingestion of glucose can make ME/CFS sufferers feel
quite unwell. I have been given dietary advice on the basis of this result.
Some doctors who treat ME/CFS routinely carry out insulin level
tests. One Australian doctor who has written a book about ME/CFS
states about his patients: "…virtually all patients tested who have
CFS/ME have demonstrated elevated insulin levels, such a finding
being associated with symptoms related to altered glucose levels and
tolerance and disturbed neurotransmitter function resulting in
neurological symptoms.' 'It is noted that these symptoms may not
always be due to a low blood glucose but to surges in insulin
levels.' (p74, (1))
How is it that we hear nothing of this phenomenon from official
sources such as the CDC? Interestingly, the Mayo Clinic site on
Causes of Chronic Fatigue Syndrome, states 'hypoglycemia' as a
possible cause of CFS but says no more abut it.
http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=3 .
Glucose tests are mentioned in CDC's minimum battery of lab screening
tests in its advice for doctors, probably with a view to excluding
diabetes but there is no mention of test for insulin levels. The
Pharmacogenomics abstracts, based on the Wichita study in which CFS
and 'fatigued' patients underwent a battery of tests make no mention
of the subject as far as I can tell. How widely is this test administered?
2. Functional Liver Detoxification Profile. This test seems to be
even more rarely mentioned in relation to ME/CFS. I had
unequivocally abnormal results according to this test, especially low
levels of glutathionation and gycination and high free salicylic
acid. The test involves taking caffeine tablets which created
elevated heart rates, sweating, trembling, etc for a few hours. I am
aware of other ME/CFS patients with abnormal results and similar reactions.
3 Low Potassium Levels. My red cell potassium level was on the
very low side of normal. 24 hour urine test confirmed an imbalance
in potassium and sodium, with excessive excretion of potassium,
indicating channellopathy (1). Potassium and ion channel activity
problems have shown up in the CDC's Wichita Study. The
Pharmacogenomics abstracts states that 'Potassium and free thyroxine
(T4) figure prominently' and ion channel problems are also referred
to. http://co-cure.org/pharmacogenomics.htm#A6. (It has been
necessary for me to take thyroxine supplementation for many years.)
4. Melatonin. I mention this because melatonin supplementation is
often recommended to ME/CFS to aid sleep. Recently I had salivary
melatonin tested. The midnight test result was 'near toxic
range'. The morning test was reported as 'grossly elevated', over
twice the reference range limit. I am not taking any
supplementation. Again, I am not alone with these results. I am
surprised that recommendationsare made to take supplementation
without any mention of testing.
The above tests, especially the glucose tolerance test are generally
accessible, although cost may be a barrier for some of them. Why do
they so seldom rate a mention? Even though these tests they may not
be diagnostic, people suffering from ME/CFS or suspected of it are
entitled to know if they have abnormal results and to have such
results considered in their treatment. There are of course, many
other tests which are often abnormal in ME/CFS and are not
mentioned. I am only commenting on my own results which are
confirmed by anecdotal or other evidence. I have not had any
neurological test, for example. Failure to administer tests to
sufferers serves to perpetuate the perception that there are no physical abnormalities in ME/CFS and the judgement that 'it's all in your head'. If doctors repeatedly found certain abnormalities in at
least some ME/CFS patients, this might at least contribute in a
practical way to taking the 'unexplained' out of the definition.
1. Chronic Fatigue Syndrome / ME Turning Disability Toward Ability.
Dr DP Lewis CFS Discovery Pty Ltd Donvale Vic 3111 Australia
2003. www.cfsdiscovery.com.au/ (Takes into account the work
of Prof. De Meirlier, Chaudhuri, et al.)
* * *
Like Susanna, I have a lab test result that is so far off that they were convinced it was lab error until the re-test was even higher (6x normal value). Seeing an abnormal test result would require the SSDI judge to acknowledge that CFS isn't another word for "fakery"; he has never referenced that test either in the transcript or the written decision; if he acknowledged its existence, he'd have to admit that I have proof of something very wrong and deserve disability benefits. Much easier to continue to deny benefits on the myth that "all tests are normal", without admitting that there's one test that's not even close to normal than to re-examine his beliefs about what CFS is.
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