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? to page top

     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? to page top

     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? to page top

     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? to page top

      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??
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     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? to page top

     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. to page top

     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.
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     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? to page top

     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? to page top

     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? to page top

     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? to page top

     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. to page top

     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? to page top

     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. to page top

     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? to page top

     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. to page top

     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

NADF does not engage in the practice of medicine, is not a medical authority, and does not claim medical knowledge.
In all cases, NADF recommends that you consult your own physician regarding any course of treatment or medication.

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