NADF News® Q & A – 2008
On 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, 2008
Question: I have had Addisons for 30 years. During a recent hospitalization routine bloodwork showed an elevated liver enzyme level. I will be undergoing additional tests soon, but wondered if NADF was aware of any relationship between Addisons and liver functioning.
Answer: The abnormal liver enzymes are not due to the Addison’s disease. Further testing should show why they are elevated.
Question: Is there any information on steroid dosing in high altitude conditions? It affects breathing, I believe, and I thought I read somewhere that we should up our steroid replacement a bit for the altitude stress.
Answer: An interesting question that I have not been asked before. I found one study on adding fairly low dose glucocorticoids to normal people suddenly dropped off at a high altitude. It showed that the steroids (in the equivalent of prednisone 10 mg) helped them function better than people not treated. I have not seen a study of Addisonians, but extrapolating the data, it would make sense to increase the dose of hydrocortisone in an Addisonian by 20 to 30 mg for acute high altitude exposure. If a gradual increase in altitude is encountered, this would probably not be necessary. Also, after prolonged exposure to high altitude, the body adjusts and extra steroids would not be required.
Question: I am an insulin-dependent diabetic, and I also suffer from Addison’s disease. I have had a problem with diarrhea since my diagnosis 2 years ago. Is this common? Is there any thing I can do for it? Diet? It zaps all the energy out of me, and my blood pressure drops.
Answer: Although diarrhea is a common symptom, along with nausea and loss of appetite in undiagnosed Addison’s disease, if it persists despite adequate replacement glucocorticoid therapy, further diagnostic studies are warranted. Type 1, or insulin-dependent diabetes is a likely factor, rather than the Addison’s disease. Some diabetics will develop diarrhea in the setting of autonomic neuropathy, often associated with gastric motility problems (gastroparesis) where the stomach does not empty very well. A full GI work-up is appropriate because persistent diarrhea will complicate the management of the Addison’s disease, where fluid shifts are dangerous. The work-up should include studies to rule out autonomic neuropathy, celiac disease (very common in association with Addison’s), Crohn’s disease, and ulcerative colitis.
Question: Can anyone help us find a doctor who specializes in kidney stones when the patient has Addison’s? We have had two large kidney stones almost a year apart that had to be blasted. Our doctor said that the stones were caused by the Addison disease. Is this true? We would like a second opinion. Thank You.
Answer: Any endocrinologist who treats your Addison’s disease should be able to assist you in evaluating any metabolic disorder contributing to the stone forming tendency. There is no direct relationship to the Addison’s disease. You need a thorough work-up including routine blood chemistries and 24 hour urine collections for calcium, uric acid, oxalate and citrate. In addition, it is helpful to chemically analyze the stones you passed. This will give your endocrinologist an idea about whether you excrete too much of any of these chemicals and possibly add medications or diet to minimize your risk of another stone. Whatever the chemistry might be, maintain a higher intake of fluids to reduce the crystallization that forms stones.
Answer: The abnormal liver enzymes are not due to the Addison’s disease. Further testing should show why they are elevated.
Question: Is there any information on steroid dosing in high altitude conditions? It affects breathing, I believe, and I thought I read somewhere that we should up our steroid replacement a bit for the altitude stress.
Answer: An interesting question that I have not been asked before. I found one study on adding fairly low dose glucocorticoids to normal people suddenly dropped off at a high altitude. It showed that the steroids (in the equivalent of prednisone 10 mg) helped them function better than people not treated. I have not seen a study of Addisonians, but extrapolating the data, it would make sense to increase the dose of hydrocortisone in an Addisonian by 20 to 30 mg for acute high altitude exposure. If a gradual increase in altitude is encountered, this would probably not be necessary. Also, after prolonged exposure to high altitude, the body adjusts and extra steroids would not be required.
Question: I am an insulin-dependent diabetic, and I also suffer from Addison’s disease. I have had a problem with diarrhea since my diagnosis 2 years ago. Is this common? Is there any thing I can do for it? Diet? It zaps all the energy out of me, and my blood pressure drops.
Answer: Although diarrhea is a common symptom, along with nausea and loss of appetite in undiagnosed Addison’s disease, if it persists despite adequate replacement glucocorticoid therapy, further diagnostic studies are warranted. Type 1, or insulin-dependent diabetes is a likely factor, rather than the Addison’s disease. Some diabetics will develop diarrhea in the setting of autonomic neuropathy, often associated with gastric motility problems (gastroparesis) where the stomach does not empty very well. A full GI work-up is appropriate because persistent diarrhea will complicate the management of the Addison’s disease, where fluid shifts are dangerous. The work-up should include studies to rule out autonomic neuropathy, celiac disease (very common in association with Addison’s), Crohn’s disease, and ulcerative colitis.
Question: Can anyone help us find a doctor who specializes in kidney stones when the patient has Addison’s? We have had two large kidney stones almost a year apart that had to be blasted. Our doctor said that the stones were caused by the Addison disease. Is this true? We would like a second opinion. Thank You.
Answer: Any endocrinologist who treats your Addison’s disease should be able to assist you in evaluating any metabolic disorder contributing to the stone forming tendency. There is no direct relationship to the Addison’s disease. You need a thorough work-up including routine blood chemistries and 24 hour urine collections for calcium, uric acid, oxalate and citrate. In addition, it is helpful to chemically analyze the stones you passed. This will give your endocrinologist an idea about whether you excrete too much of any of these chemicals and possibly add medications or diet to minimize your risk of another stone. Whatever the chemistry might be, maintain a higher intake of fluids to reduce the crystallization that forms stones.
Q&A from June, 2008
Question: I have Addison’s and I also have celiac. I know with celiac that I have to take extra calcium and vitamin D for osteoporosis. I was reading in your Q & A part that people with Addison’s should also take extra calcium. How much calcium should I be taking? I’m a 60 year old female.
Answer: For most people I would suggest 1200 mg of calcium per day from calcium carbonate or citrate, plus 800 to 1200 units of vitamin D. If constipation is a problem, add magnesium 250 mg per day to prevent the constipating effect of the calcium. Celiacs often have a significant malabsorption of vitamin D. The serum vitamin D level should be checked. If it is lower than normal, even higher doses of vitamin D may be needed, sometimes prescription strength doses. A bone density every 2 years would be useful to assess the response to the calcium and D.
Question: I am a 54 year old female who was diagnosed with Addison’s Disease five years ago. For a long time, I have wanted to try one of the dermal fillers for the deep folds around my mouth. Is there one that is safe and effective for me to use? I have asked my endocrinologist, but he is not familiar with the products. I have an appointment with my dermatologist next month to have some keratoses removed. I would like to talk with him about the fillers at that time.
Answer: I am not familiar with these products either. I can’t think of any reason you would not be able to use a skin therapy that is safe and effective for other people. As long as it does not cause any serious stress on your body, the Addison’s disease should not be a factor.
Question: I’m a 67-year old female with Addison’s and hypothyroidism. My concern is my fluctuating, sometimes very high ACTH numbers, which I started logging in 1989. I’m frightened of an increased hydrocortisone dose. My stomach is quite distended since the beginning of year and I have gotten thick in waist area. I have also developed terrific loss of bone in my jaw the last few years. I felt much better on a lower dose. My question is: What is the highest "safe ACTH read” recorded? I know we all react differently to some medications, and I really do not want to take more steroids. I sometimes feel they do more damage than good. PLEASE HELP!
Answer: Stop measuring ACTH. The level has no clinical value after the initial diagnosis of Addison’s disease. The dose of hydrocortisone should be adjusted to the clinical response – sense of well being, energy, stamina, weight gain or loss, blood pressure fluctuations, appetite, etc. It is important to take enough hydrocortisone to eliminate the symptoms of adrenal insufficiency while avoiding excessive replacement that will cause signs and symptoms of cortisol excess. Useful blood tests include electrolytes (sodium and potassium), and plasma renin (especially for adjusting the dose of fludrocortisone). If there is significant hyperpigmentation despite hydrocortisone, this is a clinical sign of high ACTH. Usually the hyperpigmentation will resolve when the dose is adequate, but may temporarily return at times of stress. This can be useful as a guide to therapy, but should be used in conjunction with the other signs and symptoms of adrenal insufficiency in making adjustments in dosage.
Question: In order for a pediatrician to refer a child to a pediatric endocrinologist, must the blood work show low NA and high K, or can other symptoms suffice? Does someone with Addison’s ALWAYS have low NA and high K? Thanks!
Answer: Abnormal electrolytes can be a useful sign of adrenal insufficiency, but they are not a necessary clue. A referral should be made if there are significant symptoms and physical findings. Some Addisonians have an abnormal ACTH stimulation test in the absence of electrolyte abnormalities.
Answer: For most people I would suggest 1200 mg of calcium per day from calcium carbonate or citrate, plus 800 to 1200 units of vitamin D. If constipation is a problem, add magnesium 250 mg per day to prevent the constipating effect of the calcium. Celiacs often have a significant malabsorption of vitamin D. The serum vitamin D level should be checked. If it is lower than normal, even higher doses of vitamin D may be needed, sometimes prescription strength doses. A bone density every 2 years would be useful to assess the response to the calcium and D.
Question: I am a 54 year old female who was diagnosed with Addison’s Disease five years ago. For a long time, I have wanted to try one of the dermal fillers for the deep folds around my mouth. Is there one that is safe and effective for me to use? I have asked my endocrinologist, but he is not familiar with the products. I have an appointment with my dermatologist next month to have some keratoses removed. I would like to talk with him about the fillers at that time.
Answer: I am not familiar with these products either. I can’t think of any reason you would not be able to use a skin therapy that is safe and effective for other people. As long as it does not cause any serious stress on your body, the Addison’s disease should not be a factor.
Question: I’m a 67-year old female with Addison’s and hypothyroidism. My concern is my fluctuating, sometimes very high ACTH numbers, which I started logging in 1989. I’m frightened of an increased hydrocortisone dose. My stomach is quite distended since the beginning of year and I have gotten thick in waist area. I have also developed terrific loss of bone in my jaw the last few years. I felt much better on a lower dose. My question is: What is the highest "safe ACTH read” recorded? I know we all react differently to some medications, and I really do not want to take more steroids. I sometimes feel they do more damage than good. PLEASE HELP!
Answer: Stop measuring ACTH. The level has no clinical value after the initial diagnosis of Addison’s disease. The dose of hydrocortisone should be adjusted to the clinical response – sense of well being, energy, stamina, weight gain or loss, blood pressure fluctuations, appetite, etc. It is important to take enough hydrocortisone to eliminate the symptoms of adrenal insufficiency while avoiding excessive replacement that will cause signs and symptoms of cortisol excess. Useful blood tests include electrolytes (sodium and potassium), and plasma renin (especially for adjusting the dose of fludrocortisone). If there is significant hyperpigmentation despite hydrocortisone, this is a clinical sign of high ACTH. Usually the hyperpigmentation will resolve when the dose is adequate, but may temporarily return at times of stress. This can be useful as a guide to therapy, but should be used in conjunction with the other signs and symptoms of adrenal insufficiency in making adjustments in dosage.
Question: In order for a pediatrician to refer a child to a pediatric endocrinologist, must the blood work show low NA and high K, or can other symptoms suffice? Does someone with Addison’s ALWAYS have low NA and high K? Thanks!
Answer: Abnormal electrolytes can be a useful sign of adrenal insufficiency, but they are not a necessary clue. A referral should be made if there are significant symptoms and physical findings. Some Addisonians have an abnormal ACTH stimulation test in the absence of electrolyte abnormalities.
Q&A from September, 2008
Question: My sister has Addison’s disease and wants to know if she should have Shingles vaccine.
Answer: There is no contraindication to shingles vaccination in Addisonian patients. Since the risk of getting the infection is no different from the rest of the population, each person should consider the risk of disease versus the benefit.
Question: I have secondary adrenal insufficiency due to a depletion of ACTH. Should I take Cortef or prednisone and in what amounts? I am a 5’1″ tall 49-year-old female. I was put on Cortef two years ago because of subcutaneous inflammations and was told the prednisone thins the layers of skin. Is this true? I’ve been taking 15 mg in the morning and 5 mg in the afternoon. I have been gaining weight on this med to the tune of 1/2 pound a month, steadily gaining 20 pounds. Any ideas as to what I should do?
Answer: Most people with secondary adrenal insufficiency have normal mineralcorticoid production (aldosterone) and lack only glucocorticoid production. Therefore, they can do very well with prednisone as their replacement steroid taken once every morning. Cortef has some mineralcorticoid activity which can raise blood pressure, and it is usually taken in 2 doses. Thinning of the skin, bruising, stretch marks and "Cushingoid” weight gain are due to the total dosage of the glucocorticoid, not the preparation. So, if you need the blood pressure assistance or potassium suppression from the Cortef, you can stay on it, but you may consider a smaller dose. Or, you can switch to prednisone and try a dose of 3 or 4 mg per day. All of these choices must be discussed with your own doctor.
Question: Would a temporary use (a few days to a couple of weeks) of St. John’s Wort, in a small dosage, interfere with prednisone/hydrocortisone, Florinef and Synthroid? If St. John’s Wort is not appropriate, are there any other supplements that could be used to help dealing with stress. My son has a very tough semester in school. The stress level cannot be healthy for anyone, especially for someone with an autoimmune disease.
Answer: There is no interference between antidepressants and steroid replacement for Addison’s disease. However, you need to understand that St. John’s Wort is an over-the-counter serotonin reuptake inhibitor that is basically like a very low dose of Prozac. The effects are very mild, but like the other SSRI’s, takes about a month to work. It should not be considered a treatment for short term stress. In my opinion, if there really is a severe emotional reaction to academic stress, a therapist or prescription medication would be needed. If it is simply the usual college stress, try relaxation techniques.
Question: Why is it that when I am in a stressed situation that has causes sleeplessness, I can take cortisol and it puts me to sleep within 30 minutes? Is this normal? Also, trying to cut back on asthma inhaler Symbicort 160/4.5 which I think has led to nasal blockage (similar to a cold without congestion) and problems sleeping and tiredness. My allergist has no idea how to address my adrenal insufficiency. I have secondary adrenal insufficiency from chemo.
Answer: There are two questions here. Stress leading to sleeplessness would tend to require extra glucocorticoid therapy to handle the stress. I presume when the extra dose is taken, it helps to relieve the stress symptoms and adds to a more relaxed state. It does not cause the sleep directly. The use of steroid-containing inhalers for asthma in the setting of secondary adrenal insufficiency can be tricky. As long as the usual baseline dose of glucocorticoid is sufficient and was not reduced when the inhaler was added, tapering slowly from the inhaler should not present much of an adrenal insufficiency effect. I would be more concerned about a return of asthma symptoms.
Answer: There is no contraindication to shingles vaccination in Addisonian patients. Since the risk of getting the infection is no different from the rest of the population, each person should consider the risk of disease versus the benefit.
Question: I have secondary adrenal insufficiency due to a depletion of ACTH. Should I take Cortef or prednisone and in what amounts? I am a 5’1″ tall 49-year-old female. I was put on Cortef two years ago because of subcutaneous inflammations and was told the prednisone thins the layers of skin. Is this true? I’ve been taking 15 mg in the morning and 5 mg in the afternoon. I have been gaining weight on this med to the tune of 1/2 pound a month, steadily gaining 20 pounds. Any ideas as to what I should do?
Answer: Most people with secondary adrenal insufficiency have normal mineralcorticoid production (aldosterone) and lack only glucocorticoid production. Therefore, they can do very well with prednisone as their replacement steroid taken once every morning. Cortef has some mineralcorticoid activity which can raise blood pressure, and it is usually taken in 2 doses. Thinning of the skin, bruising, stretch marks and "Cushingoid” weight gain are due to the total dosage of the glucocorticoid, not the preparation. So, if you need the blood pressure assistance or potassium suppression from the Cortef, you can stay on it, but you may consider a smaller dose. Or, you can switch to prednisone and try a dose of 3 or 4 mg per day. All of these choices must be discussed with your own doctor.
Question: Would a temporary use (a few days to a couple of weeks) of St. John’s Wort, in a small dosage, interfere with prednisone/hydrocortisone, Florinef and Synthroid? If St. John’s Wort is not appropriate, are there any other supplements that could be used to help dealing with stress. My son has a very tough semester in school. The stress level cannot be healthy for anyone, especially for someone with an autoimmune disease.
Answer: There is no interference between antidepressants and steroid replacement for Addison’s disease. However, you need to understand that St. John’s Wort is an over-the-counter serotonin reuptake inhibitor that is basically like a very low dose of Prozac. The effects are very mild, but like the other SSRI’s, takes about a month to work. It should not be considered a treatment for short term stress. In my opinion, if there really is a severe emotional reaction to academic stress, a therapist or prescription medication would be needed. If it is simply the usual college stress, try relaxation techniques.
Question: Why is it that when I am in a stressed situation that has causes sleeplessness, I can take cortisol and it puts me to sleep within 30 minutes? Is this normal? Also, trying to cut back on asthma inhaler Symbicort 160/4.5 which I think has led to nasal blockage (similar to a cold without congestion) and problems sleeping and tiredness. My allergist has no idea how to address my adrenal insufficiency. I have secondary adrenal insufficiency from chemo.
Answer: There are two questions here. Stress leading to sleeplessness would tend to require extra glucocorticoid therapy to handle the stress. I presume when the extra dose is taken, it helps to relieve the stress symptoms and adds to a more relaxed state. It does not cause the sleep directly. The use of steroid-containing inhalers for asthma in the setting of secondary adrenal insufficiency can be tricky. As long as the usual baseline dose of glucocorticoid is sufficient and was not reduced when the inhaler was added, tapering slowly from the inhaler should not present much of an adrenal insufficiency effect. I would be more concerned about a return of asthma symptoms.
Q&A from December, 2008
Question: I have been an Addisonian for more then 22 years. Now I have kidney failure. During dialysis, my blood pressure falls due to the extraction of salt. What can I do? I urgently wait your reply.
Answer: Your nephrologist must make adjustments in the amount of fluid extracted by the dialysis and may need to adjust your steroid replacement on the days of dialysis.
Question: My question for Dr. Margulies is has anyone noticed the frequency that MVP and adrenal insufficiency share? I’m not suggesting a direct or cause/effect relationship just a coincidence, but I am interested in how frequent they both occur together. I have seen it in those I have talked with, but I don’t know how common it is.
Answer: Mitral valve prolapse is so common in the general population, it is expected that many people with Addison’s disease would also have this diagnosis. I would also point out that many people who have been given this diagnosis based on echocardiograms performed years ago actually do not have significant mitral prolapse on more sensitive studies. Also, the old suggestion that people with MVP get prophylactic antibiotics for dental care is out of date. Only people with mitral valve regurgitation (backflow of blood across the valve) need antibiotics.
Question: I have had Addison’s disease for 7 years now and my current age is 48 years old. I had a question that my doctor can’t answer at this time. Can Addison’s patients take birth control pills? I have two large cysts that have grown on my ovaries and the doctor wants to give me birth control pills to receive balanced hormones? Do you know if birth control pills will affect my health since I have Addison’s disease? OR can I take them without out side affects?
Answer: Yes, birth control pills are safe and effective for women with Addison’s disease. They do not have any effect on the dosage of glucocorticoid or mineralocorticoid therapy.
Question: I am a veterinarian who was diagnosed with hyperaldosteronism 2 years ago. I am not responding well to a variety of medications for my hypertension. I have had a CT of my adrenals (which was normal) and now am considering pursuing adrenal vein sampling. Can you advise who in the US has the most expertise for performing this test?
Answer: Adrenal vein sampling is available at most large academic medical centers. I do not have specific names available, but you might try calling UCSF in San Francisco, or Cedars-Sinai in LA and speak with endocrinologists at those institutions about their experience.
Answer: Your nephrologist must make adjustments in the amount of fluid extracted by the dialysis and may need to adjust your steroid replacement on the days of dialysis.
Question: My question for Dr. Margulies is has anyone noticed the frequency that MVP and adrenal insufficiency share? I’m not suggesting a direct or cause/effect relationship just a coincidence, but I am interested in how frequent they both occur together. I have seen it in those I have talked with, but I don’t know how common it is.
Answer: Mitral valve prolapse is so common in the general population, it is expected that many people with Addison’s disease would also have this diagnosis. I would also point out that many people who have been given this diagnosis based on echocardiograms performed years ago actually do not have significant mitral prolapse on more sensitive studies. Also, the old suggestion that people with MVP get prophylactic antibiotics for dental care is out of date. Only people with mitral valve regurgitation (backflow of blood across the valve) need antibiotics.
Question: I have had Addison’s disease for 7 years now and my current age is 48 years old. I had a question that my doctor can’t answer at this time. Can Addison’s patients take birth control pills? I have two large cysts that have grown on my ovaries and the doctor wants to give me birth control pills to receive balanced hormones? Do you know if birth control pills will affect my health since I have Addison’s disease? OR can I take them without out side affects?
Answer: Yes, birth control pills are safe and effective for women with Addison’s disease. They do not have any effect on the dosage of glucocorticoid or mineralocorticoid therapy.
Question: I am a veterinarian who was diagnosed with hyperaldosteronism 2 years ago. I am not responding well to a variety of medications for my hypertension. I have had a CT of my adrenals (which was normal) and now am considering pursuing adrenal vein sampling. Can you advise who in the US has the most expertise for performing this test?
Answer: Adrenal vein sampling is available at most large academic medical centers. I do not have specific names available, but you might try calling UCSF in San Francisco, or Cedars-Sinai in LA and speak with endocrinologists at those institutions about their experience.
