Adrenal Diseases - Q & A General Topics
On This Page:
1) Does an adolescent with Addison’s disease require
special treatment?
2) Is there such a thing as an adrenal transplant?
3) What effect does alcohol have on people with Addison’s disease?
4) Is there a problem breast feeding for women who
take cortisone?
5) What are the statistics on how long the body can
stand taking cortisone?
6) What can you tell me about side effects with
cortisone use?
7) My biggest problem is extreme fatigue. Can you give any advice on this condition?
8) Are Addisonians supposed to be careful of too much
potassium?
9) Shouldn't all people with Addison's take
Florinef (fludrocortisone acetate)?
10) What can a postmenopausal woman and an addisonian do
about loss of libido?
11) What is the life expectancy of a person with Addison’s disease?
12) Should a woman with Addison’s be concerned about
hormone replacement?
13) What can you tell me about osteoporosis due to
long term cortisone use?
14) Does cortisone wash calcium out of the body and
gives you osteoporosis?
15) I have Addison’s disease, will I be able to get pregnant?
16) How should I handle my medication with regard to
running and weightlifting?
17) Should I adjust my medication during times of stress?
18) Is it common to gain weight and have food cravings while taking
cortisone?
The questions and answers are taken from back
issues of our quarterly newsletter, NADF News. The answers were
provided by
NADF Medical Advisor Dr. Paul Margulies, MD, FACP, FACE.
NADF News features the latest information on adrenal
diseases including Q & A and Member Contributions.
Join NADF to receive NADF News.
1) Does an adolescent with Addison’s disease require special treatment?
Your child with Addison’s disease needs to be monitored carefully by
his pediatrician. If possible, he should be followed by a pediatric
endocrinologist. Sometimes there is a need to change the dose of his
replacement steroids during adolescence.
Since children get more frequent
colds and infections, he may need extra steroids to help him through these
episodes more frequently. In addition, many endocrinologists find the need
for extra Florinef (fludrocortisone) to make sure his sodium and potassium balance are
adequate. Otherwise, there are no special problems that an adolescent with
Addison’s disease should get into.
2) Is there such a thing as an adrenal transplant?
At the present time there is no serious work being done on
transplantation of the adrenal gland to treat Addison’s disease. In the most
common type of Addison’s disease, idiopathic or autoimmune Addison’s
disease, a transplanted adrenal gland would be attacked by the same
antibodies that caused the disease in the first place, so the transplant
would not last very long. Even people who had Addison’s disease from an
infection would not be likely to benefit from a transplantation, since the
gland is so delicate and the blood vessels are so hard to connect, that the
surgery to re-connect an adrenal gland to the circulation would be quite
difficult. Luckily, in contrast to diabetes, Addison’s disease hormonal
deficiency can be replaced with medication fairly easily.
3) What effect does alcohol have on people with Addison’s disease?
Alcohol has no direct effect on addisonian people any more than
others. However, alcoholics who drink excessively and don’t eat and are
addisonian could get into serious trouble with hypoglycemia. If you have a
modest amount of alcohol, especially with meals, there should be no problem
with Addison’s disease.
4) Is there a problem breast feeding for women with Addison’s disease who
take cortisone?
Since the cortisone you take is a replacement dose only, there should
be no problem with breast feeding.
5) I am 73 years old and have had Addison's disease for 16 years, so I
was not young when I was diagnosed. I would like to know the statistics on
how long the body can stand the cortisone?
Addison's disease can actually occur at
any age, so the fact that you are 73 and have had Addison's disease for 16
years is not surprising. Since the cortisone that you take is designed to
replace what is missing, you should not worry about how long your body "can
stand" the medication. There is no cumulative effect of cortisone that is
harmful to the body.
6) My pharmacist mentioned side effects with cortisone use.
What can you tell me about this??
Your pharmacist is correct in saying that cortisone can have serious
side effects, but he is referring to doses of cortisone that are used to
treat other diseases. In these situations, cortisone is being given as a
drug, usually for its anti-inflammatory effect. Many diseases respond to
cortisone in high doses, including asthma, inflammatory bowel disease,
certain types of arthritis, and even certain types of cancer.
In contrast, the use of cortisone to treat Addison’s disease involves
giving small doses that simply replace the amount of cortisone that can no
longer be produced by the adrenal glands. In this situation, since the total
amount of cortisone in the blood is normal, the adverse side effects of
prolonged use of cortisone in "drug" doses is avoided.
7) My biggest problem is extreme fatigue. After a full week of work, I
have to rest most of the weekend. I am 60 years old and pretty sure that
this has a lot to do with it. Can you give any advice on this condition?
You mention that you get extreme fatigue, especially toward the end of
the week. You may possibly need a higher dose of hydrocortisone than the
standard 20 mg in the morning and 10 mg in the evening. Perhaps your day is
more strenuous than you think. Another possibility is that you may need mineralocorticoid (in the form of Florinef
or fludrocortisone). You do not mention whether you
take this medication, which helps to restore salt and water balance, and is
needed by most addisonians.
If, indeed, you are only on hydrocortisone and
no Florinef, talk to your endocrinologist about the possible need for
replacement mineralocorticoid and that might make the difference.
8) Are Addisonians supposed to be careful of too much potassium? There
are some people on an Addison's Listserve who talk about taking potassium
supplements.
You are right. One of the common problems I run
into is the assumption that commercial beverages like Gatorade are
appropriate for Addison's. They are not, particularly because they have too
much potassium. Addisonians should add extra salt, but not potassium, and
water in the summer, in hot weather and when exercising.
9) Shouldn't all people with Addison's take Florinef (fludrocortisone
acetate)?
I recently "met" another Addisonian via an Internet chatroom. This person
does not take Florinef or fludrocortisone.
Almost everyone with Addison's disease (primary
adrenal insufficiency) should take some amount of Florinef (fludrocortisone)
because this replaces the mineralocorticoid aldosterone, which is lacking
along with cortisol in primary disease.
Florinef causes sodium retention and potassium
excretion in the kidneys and helps to maintain blood volume and blood
pressure. There is a small amount of mineral-corticoid activity in
hydrocortisone, but usually not enough. Therefore, when Addisonians try to
replace with only hydrocortisone, they often are forced to take too much
hydrocortisone in order to keep blood volume up, resulting in weight gain
and other features of cortisone excess. The dose of Florinef can vary from
as little as 1/2 tablet to as much as 3 or 4 tablets daily.
People who have secondary adrenal insufficiency
from pituitary disease or from long term steroid use usually do not need
Florinef because they usually do not have an aldosterone deficiency. There
are, however, some exceptions when Florinef is needed to maintain blood
pressure and prevent potassium elevations.
10) As a postmenopausal woman and an addisonian, I have been experiencing
a loss of libido. What can I do about it?
Lack of libido or sex drive, is very common at menopause. Most women
do get adequate return of libido with the usual estrogen and progestin
replacements given at menopause. The typical replacements use Premarin,
Estrace, or one of the replacement patches, such as Climara or Estraderm.
Some women need some extra testosterone replacement in order to restore
normal libido, and that is present in the preparation called Estratest. Some
gynecologists will also use a separate testosterone pill in addition to
normal Premarin or Estrace. Blood testing for androgen deficiency is
generally of no value, because the levels will always be low in menopause
anyway.
There is really no literature on the incidence of poor libido
despite estrogen replacement in addisonian women at menopause.
Theoretically, one might expect more of a problem in addisonian women
because of the greater deficiency in dehydroepiandrosterone (DHEA) that
would be expected in addisonian post menopausal women. Current studies using
replacement DHEA may help to answer the question, whether this will be a
helpful strategy, but I do not suggest using DHEA yet. For now, I would
simply suggest using the available estrogen and testosterone preparations by
trial and error.
11) What is the life expectancy of a person with Addison’s disease?
I am not aware of any published studies
concerning life expectancy of people with Addison’s disease. As long as the
proper dose of replacement medication is taken every day, an Addisonian can
have a normal crisis-free life. There are no specific physical or
occupational restrictions. Addisonians should take good care of themselves,
have regular check-ups, and be conscientious about treating infections and
other medical problems that come up.
I do not think that the age of onset of
Addison’s disease should have any influence on life expectancy either.
12) In hormone replacement for menopause, should the woman with Addison’s
disease have special concerns? For example, I take .625mg of estrogen and
2.5mg of progesterone daily. There were other options, but I chose this one
as it offers the convenience of skipping my monthly cycle, which had already
stopped. Is this the best choice in view of my Addison’s disease?
I am very much in favor of the routine use of hormonal replacement
with estrogen and progesterone in addisonian women at menopause, unless
there is a specific contraindication, such as breast cancer, or large
fibroids or other uterine abnormalities that the gynecologist is concerned
about.
The regimen that you mention, using 0.625 mg/day of estrogen and 2.5
mg/day of progesterone, is an excellent one, and one that I most commonly
propose. Some gynecologists prefer to use a cycle that will continue the
regular withdrawal bleeding that women have before menopause. There continue
to be minor differences between gynecologists on which is the best regimen,
but both are safe and effective. The regimen does not have any direct effect
on the doses of replacement steroids in treating the Addison’s disease.
13) My husband has had Addison’s for 30 years. What can you tell me about
his osteoporosis (due to long term cortisone use)? I know he can use Calcitonin Nasal Spray and Fosamax. Both of these have side effects of
nausea and vomiting which can cause an addisonian crisis. What are the
alternatives? Do you suggest exercise programs, water aerobics? Should he
get an orthopedic or neuro consult for his lower back pain?
You indicate that your husband has had Addison’s disease
for 30 years
and he has osteoporosis. I presume this has been proven with a bone density
measurement. If not, it should be done using a DEXA machine for the best
accuracy. Although people with Addison’s disease (especially men according
to scant literature) do have an increased risk of osteoporosis even with
replacement steroids, this does not mean that everyone will get it.
If he
does have definite osteoporosis, I would suggest calcium 1500 mg/day,
multivitamins which include vitamin D, regular exercise, especially weight
bearing exercise (walking or a treadmill), and the use of Fosamax as the
first line drug. This can cause esophageal irritation, but generally does
not cause true nausea or vomiting. Obviously, if vomiting were to occur,
this would be dangerous for an addisonian and the drug should be stopped.
Nasal calcitonin (Miacalcin) is an alternative, but it is weaker as a
treatment for osteoporosis than Fosamax. This generally causes very few side
effects, sometimes some nasal discomfort, but should not generally cause
nausea and vomiting.
14) I heard that cortisone washes the calcium out of the body and gives
you osteoporosis which I have after taking cortisone for my Addison’s. Is
there other medicine or pills for the Addison’s? I take 1500mg Oscal
calcium.
The concern about osteoporosis from cortisone and other steroids is a
valid one. We don’t have enough data yet about normal replacement doses of
steroids. The only study on this is from the Dutch Addison’s disease group,
where they documented bone loss only in men, and not in women.
I suggest
that all addisonians have an adequate calcium intake, primarily with diet,
but certainly calcium supplements such as Oscal 1500 mg/day is quite useful.
Post menopausal women with Addison’s are encouraged to take hormone
replacement therapy with estrogen. If that is contraindicated and there is
any documentation of osteoporosis with bone density measurements, Fosamax is
a good non- hormonal treatment.
15) I have Addison’s disease, will I be able to get pregnant?
Women with Addison’s disease can get pregnant and have normal babies.
Generally, Addison’s disease has no direct effect on fertility, although
rarely some people with autoimmune Addison’s disease may have antibodies
that effect their ovaries and cause premature ovarian failure.
Generally,
women with Addison’s disease and no other medical problems will have normal
menses, normal ovulation, and normal fertility. There is no need to see a
reproductive endocrinologist unless infertility is found to be a problem.
The dosage of cortisone and Florinef taken before pregnancy is continued
throughout pregnancy, sometimes with the need for minor adjustments due to
increasing weight and other stresses that might occur.
Addisonian women may
wish to be followed by their regular obstetricians but also visit their
endocrinologists at least every 2 months throughout the pregnancy. If
necessary, intravenous hydrocortisone can be given at the time of delivery,
and is absolutely vital if a C-section is necessary.
16) I was recently diagnosed with Addison’s disease. I am very interested
to know how to handle my medication with regard to running and
weightlifting. I am an avid runner who competes in races from 1 mile up to
marathons. It is my passion. Please give me some insight.
Working with your endocrinologist, you should make appropriate
adjustments in your glucocorticoid and mineralocorticoid (hydrocortisone and
Florinef) dosages to feel comfortable and function normally at baseline
normal daily activity. Then, try to decrease the glucocorticoid dose
slightly, to establish the lowest dose that will keep you comfortable. That
will be your "normal" dose. For prolonged exercise like long distance
running, you will probably need to increase your hydrocortisone dosage and
possibly your Florinef as well. There is no magic formula - it is all trial
and error. To compensate for the sodium and water loss from sweating, try to
increase your intake of both water and salt first. If this is inadequate to
avoid lightheadedness, increase your Florinef dose by ½ pill every other
day.
Increases in hydrocortisone depend on how stressful the exercise is.
For prolonged distances, I would expect you to need at least an extra 5 mg,
but possibly more. Again, you will find a regimen to use for the days you
run, and a different dose for the days you don’t. Addisonians who are weight
lifters probably don’t need to add any extra steroid medication for normal
body building at the gym. However, if there is prolonged exercise that
causes excessive sweating, there may be a need for extra salt and fluid
replacement.
17) Should I adjust my medication during times of stress?
At times of stress, the body would normally produce extra cortisone.
People with Addison’s disease are unable to produce any cortisone, so you
have to remind yourself to take a little extra. Therefore, when awakening in
the morning after a stressful day, if you feel significant fatigue, it is
appropriate to take a little extra hydrocortisone or cortisone acetate,
whichever you normally take.
For example, if you take 20 mg of
hydrocortisone in the morning, you might take an extra 5 or 10 mg to help
you respond to stress. Likewise, even without any identifiable specific
stress, if you are feeling very tired or sluggish, a little extra cortisone
may help. This should be discussed with your doctor first, however, because
if you overdo it, you can harm yourself by consistently taking too much
cortisone every day.
18) Is it common to gain weight and have food cravings while taking
cortisone? I’ve gained 10 pounds per year since I started taking cortisone
and experience strong cravings for chocolate and ice cream.
The weight gain of 10 pounds per year since you started taking
cortisone is not appropriate. You might have been somewhat underweight when
the diagnosis was made, so an increase in weight back to normal on cortisone
would certainly be expected. However, if you are on the right dose, your
appetite and weight should remain normal. There might, indeed, be a
psychological component to your craving for chocolate and ice cream.
However, you might also be taking too much medication.
It is never
appropriate to completely stop the cortisone if you have Addison’s disease.
This can lead to a crisis which might result in hospitalization. Consult
your physician about the correct dose of cortisone for your body, mentioning
the increased appetite and weight that you have been experiencing. The
doctor may find a slight reduction will help you.
This page is dedicated in memory of Fred Fell
by 28 individual parties of friends and family who cared for him very much
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