NADF News® Q & A – 2014On 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, 2014
Question: I have been really nauseated and throwing up again, just like I did when I first got diagnosed in 2012. I just got my lab results and my BUN is really high. Have you had anyone tell you they have had kidney failure either before or after an Addison’s diagnosis?
Answer: You need to go over this with your endocrinologist. Some elevation of BUN may occur just from being dehydrated at the time of the blood test. You need to know if you have an underlying kidney disease (that would not be due to the Addison’s disease), what is causing it, and what type of treatment is needed.
Question: I have Addison’s disease, and for the last five years pancreatitis. My doctors think I have autoimmune pancreatitis, but have not yet done a biopsy. The last time they treated it was two weeks ago, and they opened a bile duct which showed no signs of kidney problems. Is there any information you have about autoimmune pancreatitis?
Answer: Autoimmune pancreatitis is not an endocrine disease and is not related to autoimmune adrenal insufficiency. It is a gastrointestinal autoimmune disorder in which antibodies injure the pancreatic digestive cells (not the endocrine cells), leading to a deficiency of pancreatic digestive enzymes. This causes poor absorption of nutrients, fatty diarrhea, weight loss and malnutrition. The evaluation is done by GI doctors and includes ruling out other GI and pancreatic diseases. The treatment is replacement oral digestive enzymes and changes in diet.
Question: I have adrenal insufficiency as well as numerous other medical conditions. I experience chronic pain because of those conditions, and have been taking opiates for years to manage it. Due to a problem with supplying my pain medication, I have been approached with the idea of using naltrexone to try and quickly break my dependency on opiates. There is not yet a plan for a replacement method to treat my pain. What is your opinion of using naltrexone therapy as an adrenal insufficient patient?
Answer: Using naltrexone is certain to cause severe pain. It is very important to manage the use of any narcotic with adrenal insufficiency. Narcotics can increase metabolism of glucocorticoids, and not enough of either pain medication or cortisol can further increase pain. Finding a balance is difficult, requiring frequent adjustments to dosages of pain medication and steroids. However, I cannot recommend using naltrexone if the opiates you are on are necessary to fight chronic pain. Naltrexone is usually only used for overcoming narcotic addiction, and it sounds like you need pain management. Without pain management, naltrexone will only further complicate your adrenal insufficiency since pain is a severe stress.
Question: I have adrenal insufficiency, and need to go in for intravenous immunoglobulin (IVIG). Should I take a stress dose of steroids in preparation for the treatment?
Answer: Definitely discuss your adrenal insufficiency and stress dosing concerns with the doctor prescribing the IVIG. Glucocorticoids like hydrocortisone are commonly given to people undergoing IVIG to treat potential reactions, even if they aren’t adrenal insufficient. Anyone with adrenal insufficiency will then likely need them, but the dosage should be worked out between you and your doctor.
Answer: You need to go over this with your endocrinologist. Some elevation of BUN may occur just from being dehydrated at the time of the blood test. You need to know if you have an underlying kidney disease (that would not be due to the Addison’s disease), what is causing it, and what type of treatment is needed.
Question: I have Addison’s disease, and for the last five years pancreatitis. My doctors think I have autoimmune pancreatitis, but have not yet done a biopsy. The last time they treated it was two weeks ago, and they opened a bile duct which showed no signs of kidney problems. Is there any information you have about autoimmune pancreatitis?
Answer: Autoimmune pancreatitis is not an endocrine disease and is not related to autoimmune adrenal insufficiency. It is a gastrointestinal autoimmune disorder in which antibodies injure the pancreatic digestive cells (not the endocrine cells), leading to a deficiency of pancreatic digestive enzymes. This causes poor absorption of nutrients, fatty diarrhea, weight loss and malnutrition. The evaluation is done by GI doctors and includes ruling out other GI and pancreatic diseases. The treatment is replacement oral digestive enzymes and changes in diet.
Question: I have adrenal insufficiency as well as numerous other medical conditions. I experience chronic pain because of those conditions, and have been taking opiates for years to manage it. Due to a problem with supplying my pain medication, I have been approached with the idea of using naltrexone to try and quickly break my dependency on opiates. There is not yet a plan for a replacement method to treat my pain. What is your opinion of using naltrexone therapy as an adrenal insufficient patient?
Answer: Using naltrexone is certain to cause severe pain. It is very important to manage the use of any narcotic with adrenal insufficiency. Narcotics can increase metabolism of glucocorticoids, and not enough of either pain medication or cortisol can further increase pain. Finding a balance is difficult, requiring frequent adjustments to dosages of pain medication and steroids. However, I cannot recommend using naltrexone if the opiates you are on are necessary to fight chronic pain. Naltrexone is usually only used for overcoming narcotic addiction, and it sounds like you need pain management. Without pain management, naltrexone will only further complicate your adrenal insufficiency since pain is a severe stress.
Question: I have adrenal insufficiency, and need to go in for intravenous immunoglobulin (IVIG). Should I take a stress dose of steroids in preparation for the treatment?
Answer: Definitely discuss your adrenal insufficiency and stress dosing concerns with the doctor prescribing the IVIG. Glucocorticoids like hydrocortisone are commonly given to people undergoing IVIG to treat potential reactions, even if they aren’t adrenal insufficient. Anyone with adrenal insufficiency will then likely need them, but the dosage should be worked out between you and your doctor.
Q&A from June, 2014
Question: I have questions about osteoporosis. I have a sensitive digestive tract, and have become gluten intolerant also. The medications left for me as options (Forteo and Prolia) have scary side-effects and I cannot decide what to do.
Answer: The oral bisphosphonate drugs are usually the best starting drugs. Those include Fosamax, Actonel, and Boniva. All are available generically. Fosamax is once a week, Actonel is once a week or month, Boniva is once a month. Despite the stories about heartburn and other GI side effects, most people actually tolerate these drugs. I would usually suggest a trial of one or two months. If the GI side effects are significant, an alternative bisphosphonate is IV Reclast. It is given once a year in a 15 minute infusion. It bypasses the GI tract. There is 5% incidence of a flu-like syndrome for 48 hours. Forteo and Prolia are saved for those with no response to the bisphosphonates, or those who fracture or worsen despite previous bisphosphonates.
Question: Any contraindications between adrenal insufficient hormone replacement medications and probiotics?
Answer: Most probiotics are used for gastrointestinal symptoms. There should be no contraindication for use with adrenal medications.
Question: For 5 years I have been fighting intermittent health problems I believe to be caused by a pheochromocytoma. CAT scans have shown that I have a small adrenal tumor, but doctors have so far told me it is “not possibly” a pheo. Am I wrong in thinking it is a pheochromocytoma that is causing my problems?
Answer: Pheochromocytomas can produce intermittent symptoms. The best way to tell is to get plasma metanephrines taken at the time symptoms and high blood pressure occur. If the tests are negative at that time, then pheo is ruled out.
Question: I am a 60-year-old weight-appropriate female that underwent a unilateral adrenalectomy approximately 18 years ago. No follow-up was recommended or done. I am relatively healthy but often wonder about the effects of being short one adrenal gland. Approx. 1.5 years after the surgery, I had to start on (and remain on) a low-dose antidepressant; I can’t seem to get off of it despite many conservative weaning protocols. Could this be related to the adrenalectomy?
Answer: One healthy adrenal is enough. If the only medical issue is difficultly weaning off an antidepressant, this should not imply any abnormality of the remaining adrenal gland. There is no need to alter your lifestyle or diet because there is only one adrenal.
Answer: The oral bisphosphonate drugs are usually the best starting drugs. Those include Fosamax, Actonel, and Boniva. All are available generically. Fosamax is once a week, Actonel is once a week or month, Boniva is once a month. Despite the stories about heartburn and other GI side effects, most people actually tolerate these drugs. I would usually suggest a trial of one or two months. If the GI side effects are significant, an alternative bisphosphonate is IV Reclast. It is given once a year in a 15 minute infusion. It bypasses the GI tract. There is 5% incidence of a flu-like syndrome for 48 hours. Forteo and Prolia are saved for those with no response to the bisphosphonates, or those who fracture or worsen despite previous bisphosphonates.
Question: Any contraindications between adrenal insufficient hormone replacement medications and probiotics?
Answer: Most probiotics are used for gastrointestinal symptoms. There should be no contraindication for use with adrenal medications.
Question: For 5 years I have been fighting intermittent health problems I believe to be caused by a pheochromocytoma. CAT scans have shown that I have a small adrenal tumor, but doctors have so far told me it is “not possibly” a pheo. Am I wrong in thinking it is a pheochromocytoma that is causing my problems?
Answer: Pheochromocytomas can produce intermittent symptoms. The best way to tell is to get plasma metanephrines taken at the time symptoms and high blood pressure occur. If the tests are negative at that time, then pheo is ruled out.
Question: I am a 60-year-old weight-appropriate female that underwent a unilateral adrenalectomy approximately 18 years ago. No follow-up was recommended or done. I am relatively healthy but often wonder about the effects of being short one adrenal gland. Approx. 1.5 years after the surgery, I had to start on (and remain on) a low-dose antidepressant; I can’t seem to get off of it despite many conservative weaning protocols. Could this be related to the adrenalectomy?
Answer: One healthy adrenal is enough. If the only medical issue is difficultly weaning off an antidepressant, this should not imply any abnormality of the remaining adrenal gland. There is no need to alter your lifestyle or diet because there is only one adrenal.
Q&A from September, 2014
Question: Since I was diagnosed with osteopena, I have learned that DHEA and testosterone are needed for strong bones and muscles. Is this true?
Answer: I am not in favor of this type of treatment. First of all, osteopenia is not at high risk for fracture. Osteoporosis is high risk. I recommend adequate vitamin D levels, good nutrition, and regular exercise to slow the gradual loss of bone mineral. There is good evidence that estrogen replacement will help in menopausal women, but that is not a good enough reason to prescribe estrogen. Low DHEA and T levels in menopause are normal. DHEA can be taken orally in women with Addison’s disease for its general improvement in sense of well-being, but its effect on bone is probably very minor. I see no reason to give any form of progesterone – orally or skin cream except to balance any extra estrogen treatment. By itself, progesterone has no benefit.
Question: I have Addison’s disease. I know that high potassium in the blood is bad for people that are adrenal insufficient. I’m now worried about a health drink I like made with fruits known for their potassium content. Is it okay to drink energy drinks, fruit drinks, and other foods with lots of extra potassium?
Answer: Drinks with quite a bit of potassium might be ok if the Addison’s is adequately treated with appropriate doses of hydrocortisone and fludrocortisone. I would suggest checking the serum potassium. If it tends to run too high, then you should modify your diet to include less potassium saturated drinks and food.
Question: I am a 69-year-old woman who was diagnosed with Addison’s disease 7 years ago. My concern now is that my hair is thinning due to the steroids I take to treat my conditions. I am using evening primrose oil and biotin daily, but it isn’t helping. Can you give me some advice?
Answer: Scalp alopecia, or hair loss, can be due to many factors. It is not a specific sign of adrenal insufficiency, but if there were intervals of needing high steroid doses to cover illness, that could contribute. It can occur with thyroid disease in the setting of either hypothyroidism or hyperthyroidism, so rechecking the blood test for thyroid function is important. Alopecia can also occur as a genetic trait, as a result of severe dieting and weight loss, with elevation of androgens, especially if accompanied by increased facial hair growth or acne. If no specific cause is found, the biotin is a good idea. I suggest 5,000 mcg per day. Topical Rogaine can be added if needed.
Question: I have Addison’s disease and am currently trying to heal from wounds. However, I have been having trouble healing. The doctors say that my immune system and ability to heal are compromised by the steroids I need to live, no matter the amount. They are trying to lower my prednisone intake, to keep me above the level of crisis symptoms, but letting my body heal better. Is this right?
Answer: This is an unfortunate clinical situation. I do maintain that the maintenance steroids used to treat people with primary adrenal insufficiency should not have a significant effect on the immune system or wound healing. However, once a person develops chronic infections and chronic wounds, they tend to be sick and often require higher doses of steroids for the acute illnesses that result from the infections. That can create a cycle of suppressed healing from the high doses for the illness. At this point, it is useless to blame the steroids, which are necessary. It is important to try to balance the wound-healing therapy with enough steroids to prevent adrenal insufficiency signs and symptoms. It will not help to try to reduce the steroids to a point where adrenal symptoms occur.
Answer: I am not in favor of this type of treatment. First of all, osteopenia is not at high risk for fracture. Osteoporosis is high risk. I recommend adequate vitamin D levels, good nutrition, and regular exercise to slow the gradual loss of bone mineral. There is good evidence that estrogen replacement will help in menopausal women, but that is not a good enough reason to prescribe estrogen. Low DHEA and T levels in menopause are normal. DHEA can be taken orally in women with Addison’s disease for its general improvement in sense of well-being, but its effect on bone is probably very minor. I see no reason to give any form of progesterone – orally or skin cream except to balance any extra estrogen treatment. By itself, progesterone has no benefit.
Question: I have Addison’s disease. I know that high potassium in the blood is bad for people that are adrenal insufficient. I’m now worried about a health drink I like made with fruits known for their potassium content. Is it okay to drink energy drinks, fruit drinks, and other foods with lots of extra potassium?
Answer: Drinks with quite a bit of potassium might be ok if the Addison’s is adequately treated with appropriate doses of hydrocortisone and fludrocortisone. I would suggest checking the serum potassium. If it tends to run too high, then you should modify your diet to include less potassium saturated drinks and food.
Question: I am a 69-year-old woman who was diagnosed with Addison’s disease 7 years ago. My concern now is that my hair is thinning due to the steroids I take to treat my conditions. I am using evening primrose oil and biotin daily, but it isn’t helping. Can you give me some advice?
Answer: Scalp alopecia, or hair loss, can be due to many factors. It is not a specific sign of adrenal insufficiency, but if there were intervals of needing high steroid doses to cover illness, that could contribute. It can occur with thyroid disease in the setting of either hypothyroidism or hyperthyroidism, so rechecking the blood test for thyroid function is important. Alopecia can also occur as a genetic trait, as a result of severe dieting and weight loss, with elevation of androgens, especially if accompanied by increased facial hair growth or acne. If no specific cause is found, the biotin is a good idea. I suggest 5,000 mcg per day. Topical Rogaine can be added if needed.
Question: I have Addison’s disease and am currently trying to heal from wounds. However, I have been having trouble healing. The doctors say that my immune system and ability to heal are compromised by the steroids I need to live, no matter the amount. They are trying to lower my prednisone intake, to keep me above the level of crisis symptoms, but letting my body heal better. Is this right?
Answer: This is an unfortunate clinical situation. I do maintain that the maintenance steroids used to treat people with primary adrenal insufficiency should not have a significant effect on the immune system or wound healing. However, once a person develops chronic infections and chronic wounds, they tend to be sick and often require higher doses of steroids for the acute illnesses that result from the infections. That can create a cycle of suppressed healing from the high doses for the illness. At this point, it is useless to blame the steroids, which are necessary. It is important to try to balance the wound-healing therapy with enough steroids to prevent adrenal insufficiency signs and symptoms. It will not help to try to reduce the steroids to a point where adrenal symptoms occur.
Q&A from December, 2014
Question: My five-year-old daughter had a tumor removed, and in treating that she was given a shot of cortisone. Since then her adrenal glands have failed. Are there any known cases of cortisone shots causing adrenal failure?
Answer: One injection of glucocorticoids should not cause permanent adrenal insufficiency. Something else must have happened, or she already had adrenal or pituitary disease.
Question: Is it possible to be “insensitive” to cortisone acetate, prednisone, or any other steroid for adrenal insufficiency?
Answer: The conversion of cortisone to cortisol (the active compound) and the conversion of prednisone to prednisolone (the active compound) requires the enzyme 11beta HSD type 1. There are some individuals who have a deficiency of this enzyme and therefore cannot convert to the active compound. Such people need hydrocortisone or prednisolone. This does not apply to fludrocortisone.
Question: I’ve read on the internet that prednisone or other steroids can suppress your thyroid, which is worse for people with hypothyroidism. Is this true?
Answer: Glucorticoid treatment for adrenal insufficiency does not block metabolism of thyroid hormone.
Question: Is taking 5 mg of oral prednisone comparable in our body to having a split dose of 2 mg of prednisone and 12 mg of hydrocortisone? What is your opinion of using two different steroids as a replacement dose, rather than just one? Any effects would this have on bone and muscle?
Answer: I generally do not use a combination of prednisone and hydrocortisone, but I have resorted to doing so on two occasions when I needed to significantly step up the glucocorticoid dosage for a short time, and did not want to add the additional mineralocorticoid effect that would come with a high dose of hydrocortisone. In the question posed, the total glucocorticoid effect would be similar to 5 mg of prednisone, but the total effect would be different. Since prednisone has a longer duration of action and much less mineralocorticoid than hydrocortisone, combining the two will have a smaller effect on blood pressure. The downside effect of glucocorticoids on bone and muscle should be roughly equivalent with the two regimens.
Answer: One injection of glucocorticoids should not cause permanent adrenal insufficiency. Something else must have happened, or she already had adrenal or pituitary disease.
Question: Is it possible to be “insensitive” to cortisone acetate, prednisone, or any other steroid for adrenal insufficiency?
Answer: The conversion of cortisone to cortisol (the active compound) and the conversion of prednisone to prednisolone (the active compound) requires the enzyme 11beta HSD type 1. There are some individuals who have a deficiency of this enzyme and therefore cannot convert to the active compound. Such people need hydrocortisone or prednisolone. This does not apply to fludrocortisone.
Question: I’ve read on the internet that prednisone or other steroids can suppress your thyroid, which is worse for people with hypothyroidism. Is this true?
Answer: Glucorticoid treatment for adrenal insufficiency does not block metabolism of thyroid hormone.
Question: Is taking 5 mg of oral prednisone comparable in our body to having a split dose of 2 mg of prednisone and 12 mg of hydrocortisone? What is your opinion of using two different steroids as a replacement dose, rather than just one? Any effects would this have on bone and muscle?
Answer: I generally do not use a combination of prednisone and hydrocortisone, but I have resorted to doing so on two occasions when I needed to significantly step up the glucocorticoid dosage for a short time, and did not want to add the additional mineralocorticoid effect that would come with a high dose of hydrocortisone. In the question posed, the total glucocorticoid effect would be similar to 5 mg of prednisone, but the total effect would be different. Since prednisone has a longer duration of action and much less mineralocorticoid than hydrocortisone, combining the two will have a smaller effect on blood pressure. The downside effect of glucocorticoids on bone and muscle should be roughly equivalent with the two regimens.
