NADF News® Q & A – 2019On 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, 2019
Question: I’ve been told by my 14-year-old daughter’s doctor that her oddly-dilated pupils are the result of the steroids she is taking for her Addison’s disease. Is this a common occurrence?
Answer: That would be incorrect information from that doctor. Neither Addison’s disease nor glucocorticoid therapy cause dilated pupils. However, many prescription and over the counter medications do, including antihistamines, decongestants, anti-nausea meds, plus anti-depressants and some seizure medications.
Question: I consulted with an ENT physician who diagnosed my tinnitus a week ago. Tests show I have a mild to moderate hearing loss in the upper registers for both ears. I’ve experienced the sound of rushing air since mid-August nonstop. I had a back injury in June and used NSAIDs sporadically; not continuously. I used Ibuprofen alternately with Aleve a couple of times a week. Would having an autoimmune disease contribute to the likelihood of NSAID use and hearing loss?
Answer: There should not be any connection between the tinnitus, NSAIDS, hearing loss and the autoimmune adrenal insufficiency. Hopefully, the tinnitus will resolve.
Question: Can Conn’s turn into Addison’s disease? My husband had his left adrenal gland removed in March 2013, and now he is having symptoms of headache, high blood-pressure, and pain in his right side-adrenal area.
Answer: With high blood pressure at this point, there is a significant risk that hyperaldosteronism is still present. The remaining adrenal may be making excess aldosterone. A full repeat endocrine evaluation is needed. Addison’s disease is not a consideration in this situation.
Answer: That would be incorrect information from that doctor. Neither Addison’s disease nor glucocorticoid therapy cause dilated pupils. However, many prescription and over the counter medications do, including antihistamines, decongestants, anti-nausea meds, plus anti-depressants and some seizure medications.
Question: I consulted with an ENT physician who diagnosed my tinnitus a week ago. Tests show I have a mild to moderate hearing loss in the upper registers for both ears. I’ve experienced the sound of rushing air since mid-August nonstop. I had a back injury in June and used NSAIDs sporadically; not continuously. I used Ibuprofen alternately with Aleve a couple of times a week. Would having an autoimmune disease contribute to the likelihood of NSAID use and hearing loss?
Answer: There should not be any connection between the tinnitus, NSAIDS, hearing loss and the autoimmune adrenal insufficiency. Hopefully, the tinnitus will resolve.
Question: Can Conn’s turn into Addison’s disease? My husband had his left adrenal gland removed in March 2013, and now he is having symptoms of headache, high blood-pressure, and pain in his right side-adrenal area.
Answer: With high blood pressure at this point, there is a significant risk that hyperaldosteronism is still present. The remaining adrenal may be making excess aldosterone. A full repeat endocrine evaluation is needed. Addison’s disease is not a consideration in this situation.
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Answers to Your Pediatric Questions by Dr. Phyllis Speiser, Pediatric Endocrinologist & NADF Medical Advisor.
Question: I have a child with adrenal insufficiency, and it’s time for them to get the medically recommended vaccinations. Is there a protocol for vaccinations in AI children? Answer: NADF, CDC and most endocrinologists advocate universal vaccinations for all individuals with adrenal disorders, including AI. There are no guidelines mandating stress steroid coverage for vaccinations in children or adults, unless the person develops fever or other serious signs of illness. One should realize that the risk nowadays of acquiring measles, flu or other diseases is far greater and more life-threatening than any possible vaccine side effects. See CDC recommendations. |
Q&A from June, 2019
Question: Is there a way to test children genetically if they will develop Addison’s disease later in life? Is there a way to confirm how likely it will occur in families where at least one member has the condition?
Answer: There is no way to diagnose Addison’s disease through a genetic test at this time. If there is a close family relative with the diagnosis I would suggest testing the children for 21-OH adrenal antibodies and anti-thyroid antibodies to see if there is an impending risk. It is not perfect, but if positive, would lead to closer surveillance to catch it early.
Question: My daughter-in-law recently had a child and is suffering from postpartum depressions with a number of symptoms. They include psychosis with hallucinations, delusions, highly abnormal hormone levels that makes her breast milk unfit to drink by her newborn, extreme anxiety, irritability, and fatigue. She is receiving support and treatment for the postpartum depression, but I’m concerned that she may also be suffering from some form of adrenal insufficiency or similarly-related hormone issues. Her potassium levels seem to be in a normal range though. Is there a way to best test for the condition given her postpartum?
Answer: Some of those symptoms could be related to adrenal insufficiency, but the extent of the work up for possible adrenal insufficiency is prompted by the clinical presentation. I expect that the her doctors found little evidence from the history, physical examination and other laboratory studies to conclude that further work up is not needed. The normal potassium is probably just one of the factors.
Question: I have Addison’s disease and have had multiple outbreaks of shingles in a year. I haven’t gotten the new vaccine for shingles because I’m worried about how it will interact with my medication. Is there a protocol for this?
Answer: A new shingles vaccination is recommended even for people who have already had outbreaks. There are risks of reactions that could result in mild illness such as soreness and fever. The vaccination is usually given in two parts, two months apart. In the event of subsequent illness, the standard protocol for extra hydrocortisone dosing to cover the added stress should be taken, as well as things to treat a fever if it occurs. There is nothing to suggest shingles and Addison’s have any connection that would increase or affect outbreaks.
Question: I was diagnosed with secondary adrenal insufficiency due too long-term use of prescribed hydrocortisone; 25 mg/day since 2008. I have tapered dosing over the past 2 years, and my latest ACTH level was below 5. For the past 2 months I have only taken a total of 55 mg per month. My low blood pressure has stabilized to normal levels and my blood pressure now elevates on days that I take any hydrocortisone. I have been receiving intermittent Kenalog injections to my left trochanter for bursitis and the same injections into bilateral heels for plantar fasciitis. My new endocrinologist says I will go into adrenal crisis once Kenalog is out of my system. Is this accurate? I want to be off steroids or at least lowest possible maintenance dosing. How can I achieve my goals?
Answer: The Kenalog injections complicate the management of the secondary adrenal insufficiency because they produce a very high level of glucocorticoid for several days followed by a slow reduction. During that time, ACTH is suppressed. Try to avoid the injections going forward. In the meantime, your endocrinologist may have to increase your hydrocortisone maintenance for a while before tapering again.
Answer: There is no way to diagnose Addison’s disease through a genetic test at this time. If there is a close family relative with the diagnosis I would suggest testing the children for 21-OH adrenal antibodies and anti-thyroid antibodies to see if there is an impending risk. It is not perfect, but if positive, would lead to closer surveillance to catch it early.
Question: My daughter-in-law recently had a child and is suffering from postpartum depressions with a number of symptoms. They include psychosis with hallucinations, delusions, highly abnormal hormone levels that makes her breast milk unfit to drink by her newborn, extreme anxiety, irritability, and fatigue. She is receiving support and treatment for the postpartum depression, but I’m concerned that she may also be suffering from some form of adrenal insufficiency or similarly-related hormone issues. Her potassium levels seem to be in a normal range though. Is there a way to best test for the condition given her postpartum?
Answer: Some of those symptoms could be related to adrenal insufficiency, but the extent of the work up for possible adrenal insufficiency is prompted by the clinical presentation. I expect that the her doctors found little evidence from the history, physical examination and other laboratory studies to conclude that further work up is not needed. The normal potassium is probably just one of the factors.
Question: I have Addison’s disease and have had multiple outbreaks of shingles in a year. I haven’t gotten the new vaccine for shingles because I’m worried about how it will interact with my medication. Is there a protocol for this?
Answer: A new shingles vaccination is recommended even for people who have already had outbreaks. There are risks of reactions that could result in mild illness such as soreness and fever. The vaccination is usually given in two parts, two months apart. In the event of subsequent illness, the standard protocol for extra hydrocortisone dosing to cover the added stress should be taken, as well as things to treat a fever if it occurs. There is nothing to suggest shingles and Addison’s have any connection that would increase or affect outbreaks.
Question: I was diagnosed with secondary adrenal insufficiency due too long-term use of prescribed hydrocortisone; 25 mg/day since 2008. I have tapered dosing over the past 2 years, and my latest ACTH level was below 5. For the past 2 months I have only taken a total of 55 mg per month. My low blood pressure has stabilized to normal levels and my blood pressure now elevates on days that I take any hydrocortisone. I have been receiving intermittent Kenalog injections to my left trochanter for bursitis and the same injections into bilateral heels for plantar fasciitis. My new endocrinologist says I will go into adrenal crisis once Kenalog is out of my system. Is this accurate? I want to be off steroids or at least lowest possible maintenance dosing. How can I achieve my goals?
Answer: The Kenalog injections complicate the management of the secondary adrenal insufficiency because they produce a very high level of glucocorticoid for several days followed by a slow reduction. During that time, ACTH is suppressed. Try to avoid the injections going forward. In the meantime, your endocrinologist may have to increase your hydrocortisone maintenance for a while before tapering again.
Q&A from September, 2019
Question: A doctor recently told me that some adrenal patients are being treated with inhaled steroids. QVAR has worked fantastic for me, but I’m taking it for asthma rather than my low adrenal output. Any chance you can point me to a study on this? Most that I’ve seen worry about inhaled steroids suppressing adrenal function.
Answer: I am not certain what your doctor had in mind. Inhaled steroids are only used to treat pulmonary diseases. There is no inhaled steroid treatment designed to manage adrenal insufficiency.
Question: My daughter became ill 3 years ago at 15. She was in and out of hospitals with various severe symptoms like nausea, dizziness, vomiting, ptosis, high blood pressure, high heart rate, limb weakness and slurred speech. They eventually suspected a pheochromocytoma. Surgery removed her left adrenal, though there was no pheochromocytoma, and she was diagnosed with adrenal medullary hyperplasia. She had full genetic testing, no genetic correlation, yet no one could advise how she got this. I was wondering if there is more information about how this develops.
Answer: I have not come across this situation. If there was adrenal medullary hyperplasia and positive tests for abnormal catecholamines and a surgical solution, then I would have to label this as an early phochromocytoma or paraganglioma. I certainly agree with the need for genetic testing to assess the risk of having another occurrence and to assist in family risk assessment. In the absence of any genetic markers, I would simply suggest continued medical monitoring for a possible second lesion.
Question: If DHEA converts to androgens and then to estrogens, does this happen post-menopause? I’m post-menopausal with premature ovarian failure since 28, and Addison’s disease since 38. Maybe I should cut back my dose, although it’s only 5 mg daily.
Answer: Yes, this does happen post-menopause. For women, DHEA 25 mg is a safe dose, for men it is 50 mg. The risk of too much DHEA in women is skin side effects; acne, hirsutism, and alopecia. If these occur, reduce the dose or stop it.
Question: I have been searching for information on how long it can take for Addison’s symptoms to develop to the noticeable level and have only found that onset is slow. What is slow? Is it possible to have mild Addison’s or a progressively developing Addison’s that develops over decades?
Answer: Unfortunately, there is not much data on this. Certainly, it can progress in a subclinical manner for a few years. I would doubt that it would remain subclinical for decades, but it is possible. A related autoimmune disorder like Hashimoto’s thyroiditis will often progress from normal thyroid function to symptomatic hypothyroidism over very many years.
Answer: I am not certain what your doctor had in mind. Inhaled steroids are only used to treat pulmonary diseases. There is no inhaled steroid treatment designed to manage adrenal insufficiency.
Question: My daughter became ill 3 years ago at 15. She was in and out of hospitals with various severe symptoms like nausea, dizziness, vomiting, ptosis, high blood pressure, high heart rate, limb weakness and slurred speech. They eventually suspected a pheochromocytoma. Surgery removed her left adrenal, though there was no pheochromocytoma, and she was diagnosed with adrenal medullary hyperplasia. She had full genetic testing, no genetic correlation, yet no one could advise how she got this. I was wondering if there is more information about how this develops.
Answer: I have not come across this situation. If there was adrenal medullary hyperplasia and positive tests for abnormal catecholamines and a surgical solution, then I would have to label this as an early phochromocytoma or paraganglioma. I certainly agree with the need for genetic testing to assess the risk of having another occurrence and to assist in family risk assessment. In the absence of any genetic markers, I would simply suggest continued medical monitoring for a possible second lesion.
Question: If DHEA converts to androgens and then to estrogens, does this happen post-menopause? I’m post-menopausal with premature ovarian failure since 28, and Addison’s disease since 38. Maybe I should cut back my dose, although it’s only 5 mg daily.
Answer: Yes, this does happen post-menopause. For women, DHEA 25 mg is a safe dose, for men it is 50 mg. The risk of too much DHEA in women is skin side effects; acne, hirsutism, and alopecia. If these occur, reduce the dose or stop it.
Question: I have been searching for information on how long it can take for Addison’s symptoms to develop to the noticeable level and have only found that onset is slow. What is slow? Is it possible to have mild Addison’s or a progressively developing Addison’s that develops over decades?
Answer: Unfortunately, there is not much data on this. Certainly, it can progress in a subclinical manner for a few years. I would doubt that it would remain subclinical for decades, but it is possible. A related autoimmune disorder like Hashimoto’s thyroiditis will often progress from normal thyroid function to symptomatic hypothyroidism over very many years.
Q&A from December, 2019
Question: My husband was recently hospitalized, and the staff physician suspected pheochromocytoma. After reading extensively, all of his symptoms concur with the hospital’s diagnosis. We followed up with our family doctor, and he has recommended a nephrologist. I have not read anywhere that our next step would be to see a nephrologist. Is there any guidance you might advise at this time?
Answer: Although an endocrinologist would usually be the specialist to confirm the diagnosis and manage the patient with medication and coordinate surgery, some nephrologists have experience with this disease. In any specific medical community, there may be a nephrologist with more experience than any local endocrinologist. The key is experience.
Question: I recently was given 100 mg of gabapentin. I have Addison’s disease. After one pill I had a crisis resulting in suicidal thoughts, fits of rage, loss of speech, crying, anxiety, and depression. I am now on day 10 and have not taken any more than just the one pill. I am still suffering from anxiety, depression, fits of crying, loss of interest, hopelessness and more. I have increased my hydrocortisone. Have you had others with this type of reaction from this drug? I am 77 and was diagnosed in 1973.
Answer: The symptoms are common side effects of gabapentin and are not related to the Addison’s disease. They should subside soon. Taking extra hydrocortisone will probably not relieve the symptoms any faster. You should not take this drug again.
Question: I have been on steroids for 19 years for secondary AI and proton pump inhibitors (PPI) for 18 years due to the steroids. I’m now having side effects of long-term use of the steroids: thinning skin, bruising, thinning bones (stress fractures), increasing A1c, etc. I’ve also developed chronic reflux which has resulted in repeated sinus infections. My internal medicine physician has discussed the possibility of a Nissen fundoplication for the reflux. Do the endocrinologists at NADF know if there is success with this procedure due to having to be on steroids for the rest of your life? Does the stomach tissue thin with the chronic steroid use like your skin does with the long-term steroid use? In May I had a bleeder cauterized in my stomach and many polyps due to long term use of PPI’s. My ferritin was 9. Any feedback would be appreciated.
Answer: There are multiple issues presented here. First, long-term use of glucocorticoids can cause thinning and easy bruising of the skin and can contribute to bone loss. Generally, these effects are related to the dose of glucocorticoids as well as the length of time taken. If replacement doses, such as prednisone 5 mg per day or hydrocortisone 15 to 20 mg per day are used, these effects are minimized. However, some people are sensitive to even these or lower doses and may have the side effect anyway. If higher doses are used over many years, the side effects are more likely to appear. Most people on replacement steroids do not have significant acid-peptic problems. Acid reflux is a common problem in the general population, but may be aggravated if high dose steroids are needed. Unfortunately, the long-term use of proton pump inhibitors for acid reflux has been prevalent for a long time. We now recognize that these drugs can contribute to bone loss. I usually advise substituting H2 blockers such as Zantac or Pepcid in place of the PPIs. Surgery for the reflux is rarely needed, but if there is serious damage to the esophagus that cannot be controlled, it may be considered. There is no specific issue with the surgery in people with AI. The steroids should not cause thinning of the stomach tissue, but the upper endoscopy should provide information about the integrity of the stomach and esophageal anatomy. I would suggest a consultation with a gastroenterologist and a GI surgeon who has experience with this procedure.
Question: I read an alert about osteoporosis drugs like Fosamax and Boniva, that say those types of drugs may have dangerous side effects. It says that bisphosphonates are over-prescribed because of profit, even with the dangers of using them are becoming more evident. The alert is written by a group that prefers non- prescription drug solutions to osteoporosis. With adrenal insufficiency, should I avoid certain osteoporosis medications, or even look for alternatives like they suggest?
Answer: Unfortunately, there is a lot of misinformation on this and many other medical topics. The authors of that alert appear to have a strong bias against any prescription therapy for osteoporosis. They put together scary sounding bits and pieces that are incorrect. In fact, the bisphosphonates have been proven to be excellent treatments that reduce the risk of fractures if used appropriately and for a time period less than 10 years. They are safe for people with adrenal insufficiency.
Answer: Although an endocrinologist would usually be the specialist to confirm the diagnosis and manage the patient with medication and coordinate surgery, some nephrologists have experience with this disease. In any specific medical community, there may be a nephrologist with more experience than any local endocrinologist. The key is experience.
Question: I recently was given 100 mg of gabapentin. I have Addison’s disease. After one pill I had a crisis resulting in suicidal thoughts, fits of rage, loss of speech, crying, anxiety, and depression. I am now on day 10 and have not taken any more than just the one pill. I am still suffering from anxiety, depression, fits of crying, loss of interest, hopelessness and more. I have increased my hydrocortisone. Have you had others with this type of reaction from this drug? I am 77 and was diagnosed in 1973.
Answer: The symptoms are common side effects of gabapentin and are not related to the Addison’s disease. They should subside soon. Taking extra hydrocortisone will probably not relieve the symptoms any faster. You should not take this drug again.
Question: I have been on steroids for 19 years for secondary AI and proton pump inhibitors (PPI) for 18 years due to the steroids. I’m now having side effects of long-term use of the steroids: thinning skin, bruising, thinning bones (stress fractures), increasing A1c, etc. I’ve also developed chronic reflux which has resulted in repeated sinus infections. My internal medicine physician has discussed the possibility of a Nissen fundoplication for the reflux. Do the endocrinologists at NADF know if there is success with this procedure due to having to be on steroids for the rest of your life? Does the stomach tissue thin with the chronic steroid use like your skin does with the long-term steroid use? In May I had a bleeder cauterized in my stomach and many polyps due to long term use of PPI’s. My ferritin was 9. Any feedback would be appreciated.
Answer: There are multiple issues presented here. First, long-term use of glucocorticoids can cause thinning and easy bruising of the skin and can contribute to bone loss. Generally, these effects are related to the dose of glucocorticoids as well as the length of time taken. If replacement doses, such as prednisone 5 mg per day or hydrocortisone 15 to 20 mg per day are used, these effects are minimized. However, some people are sensitive to even these or lower doses and may have the side effect anyway. If higher doses are used over many years, the side effects are more likely to appear. Most people on replacement steroids do not have significant acid-peptic problems. Acid reflux is a common problem in the general population, but may be aggravated if high dose steroids are needed. Unfortunately, the long-term use of proton pump inhibitors for acid reflux has been prevalent for a long time. We now recognize that these drugs can contribute to bone loss. I usually advise substituting H2 blockers such as Zantac or Pepcid in place of the PPIs. Surgery for the reflux is rarely needed, but if there is serious damage to the esophagus that cannot be controlled, it may be considered. There is no specific issue with the surgery in people with AI. The steroids should not cause thinning of the stomach tissue, but the upper endoscopy should provide information about the integrity of the stomach and esophageal anatomy. I would suggest a consultation with a gastroenterologist and a GI surgeon who has experience with this procedure.
Question: I read an alert about osteoporosis drugs like Fosamax and Boniva, that say those types of drugs may have dangerous side effects. It says that bisphosphonates are over-prescribed because of profit, even with the dangers of using them are becoming more evident. The alert is written by a group that prefers non- prescription drug solutions to osteoporosis. With adrenal insufficiency, should I avoid certain osteoporosis medications, or even look for alternatives like they suggest?
Answer: Unfortunately, there is a lot of misinformation on this and many other medical topics. The authors of that alert appear to have a strong bias against any prescription therapy for osteoporosis. They put together scary sounding bits and pieces that are incorrect. In fact, the bisphosphonates have been proven to be excellent treatments that reduce the risk of fractures if used appropriately and for a time period less than 10 years. They are safe for people with adrenal insufficiency.
