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Misdiagnosis of Chronic Fatigue
Syndrome and Fibromyalgia
below was written in 1999, nevertheless, it is still very relevant
considering the number of people who have haemochromatosis who are
being misdiagnosed for conditions such as chronic fatigue syndrome
and fibromyalgia and therefore mistreated:
will be of great concern to everyone who is diagnosed with CFIDS or
Fibromyalgia (like me!). Please send this article to anyone
concerned or publish it in your newsletters, newspapers, etc. My
name is Philip de Sterke and I work for the Dutch Liver patients
(possible) underestimated cause of chronic fatigue: Haemochromatosis
Philip H.L. de Sterke.
Haemochromatosis (iron overload) is the most common genetic
disorder. Approximately 1 in 200 to 300 humans have this disorder
(1-5). Most doctors still think it is a rare disorder (1). About 10%
of the population carries the gene that causes iron overload. When
someone inherits this gene from both parents, he or she may(6)
absorb to much iron from their normal diet. This iron will be stored
in the liver and several other tissues in the body and can cause a
great number of symptoms. These symptoms, as a cause of
Haemochromatosis, can be found in babies and small children, but it
is most common above the age of 40. Unfortunately, when symptoms are
found at this age, it is considered a "late diagnosis" and the
damage has been done. Early screening and diagnosis could help
patients completely avoid organ damage and premature death.
- One or
more of the following complaints can point to Haemochromatosis. *
Chronic fatigue * Increased susceptibility for infections * Liver
function abnormalities * Arthritis (pain, swelling and morning
stiffness of certain joints, often the hands) * Diabetes * Loss of
libido (less desire in sex) and impotence * Infertility * Swollen
stomach (or uncomfortable, heavy feeling, mostly on the right side
of the belly) * Heart complaints * Shortness of breath with physical
effort * Skin pigmentation (bronze or grey coloured skin) * Loss of
weight * Decrease in body hair * Early menopause * Porphyria Cutanea
doctor should consider Haemochromatosis in his diagnose when there
is no direct cause found for one of the above complaints (2, p.
158-9), 3, 7-9).
is that not all of these complaints are mentioned in every
publication. This is probably because of the great variety of
complaints caused by the excess iron. Chronic fatigue is most often
mentioned, and one article is entirely devoted to this problem (8).
This article states for example: "Fatigue is the most commonest
symptom present at diagnosis regardless of whether cirrhosis is
present or not. Although also a symptom of liver failure and
cirrhosis, fatigue is often a prominent symptom of precirrhotic
haemochromatosis with normal liver functions, suggesting that it is
iron overload per se that causes this symptom" (...) "A number of
studies have examined the usefulness of a variety of investigations
in the assessment of patients presenting with chronic fatigue in
general practice. In general such investigations have not proved
useful as only a low yield of abnormal results has been found.
However, such studies have not included screening tests for
haemochromatosis and sometimes even liver function tests are not
- On the
preceding list of symptoms we can add that patients with
Haemochromatosis can have problems with: diarrhea, constipation,
depression, cramp, irritability, less appetite, fainting, confusion,
immune-disorders, less concentration, sleeping problems, change in
body temperature, hair loss and food intolerance (3, 10).
are doctors who state that patients with a diagnosis of
Fibromyalgia, CFIDS or Irritable Bowel Syndrome (IBS) have a greatly
increased chance of having Haemochromatosis (10). This sound
logical, but until now there has been nothing published about this
in the scientific magazines.
- A first
diagnosis can be made most cost-effectively by measuring the
Transferrin Saturation % (T.S.% (11)) and the serum ferritin (by
taking some blood from the patient). When the T.S. is above 45 %
and/or ferritin is above 150 there will follow further examination
to establish the diagnosis (12). With a DNA-test (cheapest is $78)
the diagnosis is confirmed in about 85% off all cases (13). A liver
biopsy, until recently "the gold standard" , is not necessary for
the diagnosis of haemochromatosis (2, 9) but your doctor can ask for
this to establish the diagnosis with more precision. When there is
doubt about the diagnosis or the biopsy is refused, for
understandable reasons, a trial of phlebotomy can establish the
final diagnosis (2; p.153, 3). A liver biopsy however could be
useful to estimate the damage to the liver!
- When you
are having one of the above symptoms and your doctor can not find a
direct cause, you should ask your doctor if (s)he has already done
the mentioned tests or if (s)he wants to do this. Also an eventual
anemia (shortage of iron) should be tracked this way. Measuring of
hemoglobin and/or hematocrit does not give a certain diagnosis and
they are therefore of no use for the diagnosis of this disorder! Be
sure to know your own exact T.S.% and serum ferritin level! As
mentioned before, doctors underestimate the problem of iron overload
and use too high serum values for their "normal range" and/or do not
respond when they are elevated.
- This is
concerning, as it is essential to intervene as quickly as possible.
For this reason, several investigations and (medical-) organizations
dispute for the preventive screening of the whole population on
Haemochromatosis. According to them this should be done with
everyone above the age of 20 years (1, 2; p. 140). Despite
overwhelming evidence supporting the necessity of screening, several
investigators and mainstream medical organizations still dispute the
benefits of preventive screening.
people still think that when you are tired you should take iron
supplements. After what you have read here, it should be clear that
iron supplements should not be taken before one is thoroughly
examined, (14) including the above mentioned tests. This is not
always done, with possible negative consequences. If you used
iron-supplements (in great quantities?) in the past, without being
thoroughly examined, you should ask for these tests.
treatment of Haemochromatosis is simple and cheap, namely
bloodletting. With this method excess iron is removed easily and
quickly in large amounts in the most efficient way. When
bloodletting is not possible there are alternative options. After
treatment, and if the diagnosis is fairly early, most complaints
Official Patient Sourcebook on Hemochromatosis Review
Century Ultimate Medical Guide to Hemochromatosis - Authoritative
Clinical Information for Physicians and Patients (Two CD-ROM Set)
Exposing The Hidden Dangers of Iron Book Review
Genetics, Pathophysiology, Diagnosis and Treatment (For Medical
of Haemochromatosis Sufferers
You Been Misdiagnosed With Chronic Fatigue Syndrome and Fibromyalgia?
of Haemochromatosis in People of Italian Descent
and Acquired Iron Overload
the C282Y mutation an Irish Gaelic mutation that the
Vikings help disseminate?