A. Many men who are diagnosed with haemochromatosis will also be
diagnosed with hypogonadism which in essence means that their bodies
do not produce enough testosterone; which is the male sex hormone.
The result of this is a decline in their sexual interest and
activity; which is manifested in sexual dysfunction or the failure
to obtain an erection. Also, male characteristics may diminish to
some degree or other. In my case this was referred to an
endocrinologist who prescribed testosterone replacement therapy to
try to stimulate my calcium production and prevent the development
of osteoporosis. Some male functions including erections did return
after a while, but testosterone capsules will be needed throughout
my life.
I have no personal direct knowledge of the effects on women but I
understand that a reduced or poor libido can also take place. I must
emphasise strongly that testosterone is not intended as a treatment
solely for sexual dysfunction and sufferers experiencing this
problem should seek specialist medical help.
Sexual Dysfunction (Fast Facts Series)
Sexual dysfunction is a large physiological and psychological problem of modern living and can cause much distress. This inexpensive English paper-back, whilst written for clinicians will give all interested persons a good overview of many aspects of the condition
Q.Will I pass this to my children?
A. People with haemochromatosis often wonder what effect this will
have on their offspring and it is not within the scope of these
questions to give detailed information on the genetics of this
illness. I can nevertheless mention that all of the children of a
haemochromatotic must be at least heterozygous which is in effect a
carrier and will carry only one copy of the defective gene from
their birth. It is not impossible for a carrier to develop
haemochromatosis but is very unlikely and to pass on the defect the
carrier would need a partner who was also a carrier.
This is a recessive genetic illness which means simply that both
parents of a sufferer must have been carriers at least.
Q. If I am tested and have the genes (or one of them) does this
mean that I have haemochromatosis?
A. The answer is no, as this gene has a low penetrance; which simple
means that whilst every haemochromatotic has the gene, not every one
with the gene will have the illness, nor develop it. The number is
quite small, about 5% to 10%
Q.Why must I be blood let for treatment?
A. This is the only effective treatment available at present and
involves removing about a pint of blood at a time. This is done by
the insertion of a needle usually in a vein around the crook in your
arm. They will also wind a tourniquet around your upper arm to
swell the vein. It is difficult to say how long it will take as
people vary greatly but about 20 to 30 minutes is about normal and
when you have finished, after about 15 minutes rest and a cup of tea
you should be able to return home safely. The removed blood is
replaced very quickly. Some people find it difficult to maintain a
flow of blood and may find the insertion of the needle uncomfortable
and so a topical anaesthetic ( a local one ) can be obtained to put
on the site about thirty minutes before you arrive for venesection.
This is Emla Cream or Ametop Gel both of which can be either
purchased inexpensively at a pharmacist or obtained on prescription.
Q.Will I have any side effects?
A.There are a few side effects that occur infrequently and one of
these is to go into a degree of shock or fainting during the
venesection, possibly through nervousness or because the blood flows
out too quickly, which has happened to me a couple of times. This is
not a problem since this normally takes place in a chair or on a bed
in an environment where there are experienced doctors and nurses in
attendance.
Another side effect that can happen and has happened to me several
times is when I have been over bled and my haemoglobin dropped to a
point where I became anaemic. You must keep an eye on your
haemoglobin level and be cautious if it is approaching a figure of
around 11.0 g/dl. Once this happens (anaemia) it may take some
weeks to recover and you are likely to experience fatigue and
tiredness.
Q. When will my symptoms show an improvement?
A. This will depend on the level of your Serum Ferritin at the start,
as a venesection will only remove about 200mg of iron and will
therefore require five of them to remove just a gram of iron.
Venesection will usually be weekly and may take place for up to 2
years. Haematologists now like to maintain your serum ferritin at
below 50ng/mlt.
After this initial period you will need maintenance venesctions and
that may be required 3 or 4 a year for the rest of your life. At
present there is no alternative. Sufferers often ask me if there is
a chemical iron remover in tablet form ( chelator ). There are
several, but these are not generally used for haemochromatosis as
they are too slow in their removal of iron.
Q.Will my symptons definitely ease?
A. The simple answer is yes, some of them will but this will not be
the same nor to the same amount for each person. In a recent survey
conducted by my society most members reported some easing of most of
their symptoms. Regrettably, the symptom that had the least
improvement in our survey was arthritis, as the damage seemed to be
permanent.
Q. Can my diabetes be eliminated?
A. If you have been diagnosed with diabetes, then this is generally the
none insulin dependent type 2 and with careful management should not
be a gravely disabling problem. However, once you are diagnosed with
diabetes it will not get better as your treatment progresses.
Q. Does it matter what I eat?
A. It is true that the accumulated iron in your body is derived from
the food you ate but in Haemochromatosis this is an accumulation
over a period since your birth and in the U.K. little consideration
is given to dietary attention since the digestion of iron from
daily meals is likely to be so small. In the States there is a
different attitude and you will find many articles and web sites on
diets for haemochromatotics. Apart from avoiding obvious items such
as offal and Guinness I would not worry about it too much. However,
it is a proven fact that drinking our ordinary British tea can
reduce the absorption of iron into our bodies, especially if drunk
with a meal. The opposite is true with concentrated fruit juices and
especially vitamin C supplements. They should be avoided as they
contain extra vitamin C which increases the absorption of iron.
Living with Hemochromatosis
by
Gregory T Everson
Q. Can you recommend a receipe book
written for someone with haemochromatosis?
Yes as a matter of fact, I can! Perhaps the most knowledgeable person on diet is the American Cheryl Garrison who has given me the exclusive recipe for low iron Flank Steak - click here to go the the recipe
The Hemochromatosis Cookbook
by Cheryl Garrison
I have always enjoyed cooking but I was a little bit phased when I realized that I would have to cook
differently to limit my iron intake. Cheryl Garrison's book, has been a great help to me in keeping me focused on this dietry requirement. Cheryl's husband suffers from our complaint and Cheryl whom I have known for several years, has worked intensely to find tasty and interesting low iron dishes. She is rather an authority on G.H. and ran a lively forum for the Iron Institute of America
GLOSSARY
Hypogonadism...the inability of the testes to produce
testosterone.
Sexual Dysfunction...basically not being able to
maintain an erection.
Endocrinologist...an expert on hormones and and their
function.
Osteoporosis...brittle bones.
Heterozygous...carrying only one copy of a gene (carrier).
Homozygous...carrying two copies of a gene.
Recessive...This is when the gene is found in each of
the partners , that is both parents.
Penetrance...measure of the number of people
displaying symptoms from a gene.
Tourniquet...a band wrapped around a limb to restrict
the blood flow.
Venesection...blood letting, also known as phlebotomy
especially in the States.
Haemoglobin...a constituent of the red
blood cells that carries iron and oxygen.
Heam and non-heam iron...noneheme iron is found in vegetables fruits nuts and cereals and accounts for about 90% of body iron. Only a small portion is absorbed. Heme iron is found in meat fish and meat products and is more readily absorbed.
Serum Ferritin...a stored iron protein used as a
measure for monitoring haemochromatosis.
I am not medically qualified and definitions on this site
may not have the scientific exactitude and are intended for
lay persons like myself.
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