NADF News® Q & A – 2005On this page you will find questions and answers from the quarterly published NADF News.
Written by Paul Margulies, MD, FACE, FACP, Medical Director, NADF. Clinical Associate Professor of Medicine, Zucker School of Medicine at Hofstra/Northwell. |
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Q&A from March, 2005
Question: I have read that when women are on estrogen and progesterone they need less cortisone, so when they come off estrogen and progesterone wouldn’t they need more cortisone?
Answer: I have not seen any relationship between cortisone dose in Addison’s disease and use of estrogen and progesterone.
Question: How long do you have to be off cortisol before you can get an accurate ACTH stimulation test result? Example: A patient is on Cortef. His doctor takes him off the Cortef and prescribes dexamethasone. How long should they wait before doing the ACTH stimulation test?
Answer: I assume the work-up is to rule out Addison’s disease. In that case, I would wait at least two weeks after the switch to dexamethasone, hold the morning dose and then give the standard ACTH stimulation test. There is no journal article to quote regarding my recommendation for two weeks on dexamethasone. It reflects my bias from many years of clinical practice during which patients were sometimes referred to me on unknown doses of various steroid preparations, sometimes including intramuscular and topical steroids, and I was asked to determine if there really was underlying adrenal insufficiency. The point is that all cortisone or any other glucocorticoid that might be measured as cortisol in serum or urine assays must be totally cleared from the body before performing the stimulation test. In addition, one would like to allow the pituitary to readjust to a reasonable dose of glucocorticoid that avoids severe suppression of ACTH that might have occurred while on high dose cortisone. This will allow measurement of baseline plasma ACTH before the administration of the Cortrosyn, enhancing the value of the test. By the way, in cases where autoimmune Addison’s is suspected, I recommend adding a blood test for 21-OH adrenal antibody for confirmation.
Question: Endocrinologists who specialize in diabetes who are called diabetologists and those who specialize in the thyroid who are called thyroidologists? Are there adrenalologists?
Answer: No one calls themselves an adrenologist. Maybe I should start.
Question: I read all kinds of stuff regarding cardio-fitness. And I read all kinds of stuff saying that we with adrenal problems should not exert ourselves longer than 45 minutes or excess cortisol kicks in and will further stress our bodies. Can you give me some general guidelines as to length of time we can exercise in total and of that time how much should be spend on exertion vs. just a gentle heart rate increase? I hope that makes sense.
Answer: I believe everyone should try to stay physically fit with regular exercise and good diet. There is no specific restriction on exercise for people with Addison’s disease. For general fitness, I suggest an aerobic routine like a treadmill for 30 minutes with added training exercises like weights if desired. There is nothing wrong with doing more exercise – just listen to your body. Make sure you stay well hydrated and replace salt as needed, especially if you are exercising in hot weather. If the exercise causes excess fatigue, it may be necessary to add a little extra hydrocortisone before the next routine. Start with an extra 5 mg and go up from there if needed.
Question: I have benefited greatly from DHEA supplementation. My doctor is not big on this. I am taking pharmaceutical grade 20 (mg?). The more I take the better I feel. At 150 (mg?) I was feeling GREAT but then I read to only take 16 to 20 (mg?) per day so I am now taking just the one tablet. Does the NADF have any recommendations on supplementing with DHEA as to frequency and dosage size?
Answer: My suggestion for DHEA is 25 mg per day for women, 50 mg for men. It doesn’t seem to do much for everyone. If it helps with overall sense of well being (admittedly vague), keep taking it. If there is no response, stop it.
Answer: I have not seen any relationship between cortisone dose in Addison’s disease and use of estrogen and progesterone.
Question: How long do you have to be off cortisol before you can get an accurate ACTH stimulation test result? Example: A patient is on Cortef. His doctor takes him off the Cortef and prescribes dexamethasone. How long should they wait before doing the ACTH stimulation test?
Answer: I assume the work-up is to rule out Addison’s disease. In that case, I would wait at least two weeks after the switch to dexamethasone, hold the morning dose and then give the standard ACTH stimulation test. There is no journal article to quote regarding my recommendation for two weeks on dexamethasone. It reflects my bias from many years of clinical practice during which patients were sometimes referred to me on unknown doses of various steroid preparations, sometimes including intramuscular and topical steroids, and I was asked to determine if there really was underlying adrenal insufficiency. The point is that all cortisone or any other glucocorticoid that might be measured as cortisol in serum or urine assays must be totally cleared from the body before performing the stimulation test. In addition, one would like to allow the pituitary to readjust to a reasonable dose of glucocorticoid that avoids severe suppression of ACTH that might have occurred while on high dose cortisone. This will allow measurement of baseline plasma ACTH before the administration of the Cortrosyn, enhancing the value of the test. By the way, in cases where autoimmune Addison’s is suspected, I recommend adding a blood test for 21-OH adrenal antibody for confirmation.
Question: Endocrinologists who specialize in diabetes who are called diabetologists and those who specialize in the thyroid who are called thyroidologists? Are there adrenalologists?
Answer: No one calls themselves an adrenologist. Maybe I should start.
Question: I read all kinds of stuff regarding cardio-fitness. And I read all kinds of stuff saying that we with adrenal problems should not exert ourselves longer than 45 minutes or excess cortisol kicks in and will further stress our bodies. Can you give me some general guidelines as to length of time we can exercise in total and of that time how much should be spend on exertion vs. just a gentle heart rate increase? I hope that makes sense.
Answer: I believe everyone should try to stay physically fit with regular exercise and good diet. There is no specific restriction on exercise for people with Addison’s disease. For general fitness, I suggest an aerobic routine like a treadmill for 30 minutes with added training exercises like weights if desired. There is nothing wrong with doing more exercise – just listen to your body. Make sure you stay well hydrated and replace salt as needed, especially if you are exercising in hot weather. If the exercise causes excess fatigue, it may be necessary to add a little extra hydrocortisone before the next routine. Start with an extra 5 mg and go up from there if needed.
Question: I have benefited greatly from DHEA supplementation. My doctor is not big on this. I am taking pharmaceutical grade 20 (mg?). The more I take the better I feel. At 150 (mg?) I was feeling GREAT but then I read to only take 16 to 20 (mg?) per day so I am now taking just the one tablet. Does the NADF have any recommendations on supplementing with DHEA as to frequency and dosage size?
Answer: My suggestion for DHEA is 25 mg per day for women, 50 mg for men. It doesn’t seem to do much for everyone. If it helps with overall sense of well being (admittedly vague), keep taking it. If there is no response, stop it.
Q&A from June, 2005
Question: Recently, my endocrinologist, while on a routine visit, lowered my Cortef (10 mg) to a total of 15mgs a day. I am 76 years old and have taken 30 mg of Cortef for the entire 38 years I have been diagnosed with Addison’s. She states that ALL Addisonians are being similarly lowered to these levels. Do you know of any research that is ongoing concering this drop in corticosteroid level? I am not doing well on the low dose and must grab a 10 mg tablet many times over the course of a week.
Answer: Although it is true that 30 mg of hydrocortisone is probably more than enough for most otherwise healthy Addisonians, I think it is important to slowly change the dose on any stable patient with adrenal insufficiency. The symptoms that you have certainly suggest that you need more than 15 mg. I think it is a mistake to put all people in the same basket. There is a wide range of steroid requirement, from as little as 10 mg per day to as much as 50 to 60 mg. I find that most do well with 20 to 25 mg per day. I suggest that you talk to your endocrinologist about your response to the change in dose and try 25 mg for now.
Question: Are the new diet supplements that break down cortisol and "stubborn belly fat” dangerous for Addison’s patients?
Answer: I’ve seen those ads for the diet pills that block cortisol, and they make me cringe! What is in there? I have no idea, but whatever it is, it can’t be any good for anybody, especially anyone with Addison’s disease. There are no currently available diet pills that are both safe and effective for anyone!
Question: I have a question regarding possible interference of methotrexate with Cortef. I was put on methotrexate (7.5 mg once a week) for rheumatoid arthritis about early October. It didn’t help; in fact I began to feel worse, but we were finishing a new house, moving in, etc. and I attributed this to stress. In early December, the dosage was increased to 10 mg per week. I began to feel REALLY HORRIBLE. Weak, upset stomach and weepy. It’s hard to describe how awful I felt. My normal dose of Cortef was 25-30 mg per day (10-10-5). I had gone to 60 mg per day and it didn’t seem to help. I started going through my files regarding Addison’s and came across a short blurb about drug interference with cortisone. I discussed it with my PCP (not an endocrinologist as none are available in this area). We decided to drop the methotrexate about mid-December. I began to feel better as of early February. I am wondering if the methotrexate is indeed the culprit, how long it should take to get this out of my system and if there is something I could take in place of it. I would prefer not taking anything at this time if I can avoid it. Too many pills.
Answer: I am not aware of any interference in cortisone metabolism from methotrexate. The fact that increasing the hydrocortisone dosage didn’t help suggests that it was not the adrenal insufficiency that made you feel bad, it was the methotrexate. Many people can’t tolerate it. I am not able to suggest other treatment for the RA. You need a rheumatologist to review your condition and your previous drug effects.
Question: Endocrinologists who specialize in diabetes who are called diabetologists and those who specialize in the thyroid who are called thyroidologists? Are there adrenalologists?
Answer: No one calls themselves an adrenologist. Maybe I should start.
Answer: Although it is true that 30 mg of hydrocortisone is probably more than enough for most otherwise healthy Addisonians, I think it is important to slowly change the dose on any stable patient with adrenal insufficiency. The symptoms that you have certainly suggest that you need more than 15 mg. I think it is a mistake to put all people in the same basket. There is a wide range of steroid requirement, from as little as 10 mg per day to as much as 50 to 60 mg. I find that most do well with 20 to 25 mg per day. I suggest that you talk to your endocrinologist about your response to the change in dose and try 25 mg for now.
Question: Are the new diet supplements that break down cortisol and "stubborn belly fat” dangerous for Addison’s patients?
Answer: I’ve seen those ads for the diet pills that block cortisol, and they make me cringe! What is in there? I have no idea, but whatever it is, it can’t be any good for anybody, especially anyone with Addison’s disease. There are no currently available diet pills that are both safe and effective for anyone!
Question: I have a question regarding possible interference of methotrexate with Cortef. I was put on methotrexate (7.5 mg once a week) for rheumatoid arthritis about early October. It didn’t help; in fact I began to feel worse, but we were finishing a new house, moving in, etc. and I attributed this to stress. In early December, the dosage was increased to 10 mg per week. I began to feel REALLY HORRIBLE. Weak, upset stomach and weepy. It’s hard to describe how awful I felt. My normal dose of Cortef was 25-30 mg per day (10-10-5). I had gone to 60 mg per day and it didn’t seem to help. I started going through my files regarding Addison’s and came across a short blurb about drug interference with cortisone. I discussed it with my PCP (not an endocrinologist as none are available in this area). We decided to drop the methotrexate about mid-December. I began to feel better as of early February. I am wondering if the methotrexate is indeed the culprit, how long it should take to get this out of my system and if there is something I could take in place of it. I would prefer not taking anything at this time if I can avoid it. Too many pills.
Answer: I am not aware of any interference in cortisone metabolism from methotrexate. The fact that increasing the hydrocortisone dosage didn’t help suggests that it was not the adrenal insufficiency that made you feel bad, it was the methotrexate. Many people can’t tolerate it. I am not able to suggest other treatment for the RA. You need a rheumatologist to review your condition and your previous drug effects.
Question: Endocrinologists who specialize in diabetes who are called diabetologists and those who specialize in the thyroid who are called thyroidologists? Are there adrenalologists?
Answer: No one calls themselves an adrenologist. Maybe I should start.
Q&A from September, 2005
Question: If I were to have a blood test for adrenal autoantibodies, exactly which autoantibodies would be tested? I have premature ovarian failure, diagnosed in 1984, and Primary Adrenal Insufficiency diagnosed in 1994. My endocrinologist told me at diagnosis that POF is a ‘red flag’ for future development of Addison’s disease. Is the same autoantibody vs. steroid enzymes at work in both diseases?
Answer: The best antibody test for Addison’s disease is the anti-21 hydroxylase test, available by commercial labs. Avoid the older “anti-adrenal antibody” test. I am not aware of any anti-ovary antibody test currently available.
Question: I live in Argentina. I am taking hydrocortisone (50 mg per day) and fludocortisone: one pill per day. My problem is that I suffered from high blood pressure before I was diagnosed with Addison’s, so I cannot take extra salt, and because of the warm weather, I sweat a lot and am losing too much salt. My endo does not know how to control it.
Answer: People who have Addison’s disease as well as hypertension still need to take mineralocorticoid replacements like fludrocortisone, but often have to modify the regimen. There is a significant amount of mineralocorticoid activity in the hydrocortisone, and 50 mg is a fairly large dosage. If there are any signs of cortisone excess, such as weight gain, facial roundness, stretch marks or facial redness, it may be useful to work with your doctor on a slight reduction in the hydrocortisone dose first. Next, a reduction in the dose of fludrocortisone may help lower the blood pressure. I have used doses as low as 1/2 pill every 3 days. Finally, antihypertensive medication can be added, but never a diuretic. Medications like calcium channel blockers, beta blockers, and alpha blockers can be used safely in Addison’s disease.
Question: I have severe adrenal insufficiency. I have been placed in the hospital several times because of my condition. When they administer the IV of isotonic saline, how much should they give me? I have been given a different amount each time I have been in the hospital. Any information you can give me would be most helpful.
Answer: The amount of IV saline given for an adrenal crisis varies with the degree of dehydration, the severity of the signs of adrenal insufficiency, and whether there are other medical conditions, such as heart disease that might limit the ability of the body to utilize the fluid. Most of the time, if there are no other disorders, one liter of saline should be given along with 100 mg of hydrocortisone within the first hour, then 100 to 200 ml per hour after that until blood pressure and electrolytes (sodium and potassium) are back to normal.
Question: I have read that diagnosing adrenal fatigue can be very tricky and there are many types of different tests. Could you please share with me as to which one you think is the most accurate?
Answer: “Adrenal fatigue” is not a recognized medical diagnosis. Addison’s disease is the correct term for primary adrenal insufficiency and is diagnosed with an abnormal lack of response to ACTH or Cortrosyn, elevated levels of ACTH, positive 21-OH antibodies (if autoimmune) and characteristic symptoms and physical findings. Clearly, people with Addison’s disease must go through a period of relative loss of adrenal reserve before they present with the full set of abnormalities of total adrenal failure. During that phase, there may be partial adrenal insufficiency that may give test results that are in between normal and classic Addison’s. I would use the term early or partial adrenal insufficiency not, "adrenal fatigue”. I think that term is used by people who propose that the adrenals "wear out” from various stresses and miss the point that Addison’s disease is not caused by stress, but by specific injury from antibodies, hemorrhage, infections, tumors, or surgery.
Answer: The best antibody test for Addison’s disease is the anti-21 hydroxylase test, available by commercial labs. Avoid the older “anti-adrenal antibody” test. I am not aware of any anti-ovary antibody test currently available.
Question: I live in Argentina. I am taking hydrocortisone (50 mg per day) and fludocortisone: one pill per day. My problem is that I suffered from high blood pressure before I was diagnosed with Addison’s, so I cannot take extra salt, and because of the warm weather, I sweat a lot and am losing too much salt. My endo does not know how to control it.
Answer: People who have Addison’s disease as well as hypertension still need to take mineralocorticoid replacements like fludrocortisone, but often have to modify the regimen. There is a significant amount of mineralocorticoid activity in the hydrocortisone, and 50 mg is a fairly large dosage. If there are any signs of cortisone excess, such as weight gain, facial roundness, stretch marks or facial redness, it may be useful to work with your doctor on a slight reduction in the hydrocortisone dose first. Next, a reduction in the dose of fludrocortisone may help lower the blood pressure. I have used doses as low as 1/2 pill every 3 days. Finally, antihypertensive medication can be added, but never a diuretic. Medications like calcium channel blockers, beta blockers, and alpha blockers can be used safely in Addison’s disease.
Question: I have severe adrenal insufficiency. I have been placed in the hospital several times because of my condition. When they administer the IV of isotonic saline, how much should they give me? I have been given a different amount each time I have been in the hospital. Any information you can give me would be most helpful.
Answer: The amount of IV saline given for an adrenal crisis varies with the degree of dehydration, the severity of the signs of adrenal insufficiency, and whether there are other medical conditions, such as heart disease that might limit the ability of the body to utilize the fluid. Most of the time, if there are no other disorders, one liter of saline should be given along with 100 mg of hydrocortisone within the first hour, then 100 to 200 ml per hour after that until blood pressure and electrolytes (sodium and potassium) are back to normal.
Question: I have read that diagnosing adrenal fatigue can be very tricky and there are many types of different tests. Could you please share with me as to which one you think is the most accurate?
Answer: “Adrenal fatigue” is not a recognized medical diagnosis. Addison’s disease is the correct term for primary adrenal insufficiency and is diagnosed with an abnormal lack of response to ACTH or Cortrosyn, elevated levels of ACTH, positive 21-OH antibodies (if autoimmune) and characteristic symptoms and physical findings. Clearly, people with Addison’s disease must go through a period of relative loss of adrenal reserve before they present with the full set of abnormalities of total adrenal failure. During that phase, there may be partial adrenal insufficiency that may give test results that are in between normal and classic Addison’s. I would use the term early or partial adrenal insufficiency not, "adrenal fatigue”. I think that term is used by people who propose that the adrenals "wear out” from various stresses and miss the point that Addison’s disease is not caused by stress, but by specific injury from antibodies, hemorrhage, infections, tumors, or surgery.
