NADF News® Q & A – 2016
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, 2016
Question: I’m 65 and an Addisonian. I recall reading that seniors with Addison’s disease shouldn’t get the senior citizen flu-shot, and should instead just get the regular kind. Is that true?
Answer: Frankly, either one is fine. Whoever has a shot to give you; take it if you haven’t for flu season.
Question: I have a kidney stone, my first one ever, and the stone has not passed yet. They want to talk about procedures to remove the stone. I would like to know if I need to be on cortisol during any type of kidney stone procedure. I have secondary Addison’s.
Answer: Yes, steroid coverage is needed for any surgical procedure. The urologist will be familiar with this. A dose of 50 to 100 mg of hydrocortisone at the time of anesthesia and follow up doses depending on whether there is much post-op pain should be given.
Question: What is the protocol for taking a chemical cardiac stress test? Is it safe to do?
Answer: Despite the term stress test, these tests do not cause significant enough stress to warrant any additional glucocorticoid coverage for people with adrenal insufficiency. Whether it is a chemical stress test or a treadmill test, it is physiologically like taking a very brisk walk or jog for several minutes.
Question: I had a left adrenalectomy secondary to a pheochromocytoma which was 5 cm at time of removal. Since that time I have had a weight gain of almost 60 pounds despite my attempts to eat healthy and maintain a healthy lifestyle, nothing seems to help. I saw an article recently […] and was wondering if there might be a metabolic issue that is creating some of the weight gain?
Answer: One basic issue is that the pheochromocytoma caused a degree of hypermetabolism that has now disappeared. The excess production of epinephrine increased caloric utilization in a pathologic way, and you are now back to a “normal” metabolism that seems relatively slow. Unfortunately, you must adapt to the new normal, and diet and exercise to bring the weight down. Eventually, you should be able to reach a new stability.
Answer: Frankly, either one is fine. Whoever has a shot to give you; take it if you haven’t for flu season.
Question: I have a kidney stone, my first one ever, and the stone has not passed yet. They want to talk about procedures to remove the stone. I would like to know if I need to be on cortisol during any type of kidney stone procedure. I have secondary Addison’s.
Answer: Yes, steroid coverage is needed for any surgical procedure. The urologist will be familiar with this. A dose of 50 to 100 mg of hydrocortisone at the time of anesthesia and follow up doses depending on whether there is much post-op pain should be given.
Question: What is the protocol for taking a chemical cardiac stress test? Is it safe to do?
Answer: Despite the term stress test, these tests do not cause significant enough stress to warrant any additional glucocorticoid coverage for people with adrenal insufficiency. Whether it is a chemical stress test or a treadmill test, it is physiologically like taking a very brisk walk or jog for several minutes.
Question: I had a left adrenalectomy secondary to a pheochromocytoma which was 5 cm at time of removal. Since that time I have had a weight gain of almost 60 pounds despite my attempts to eat healthy and maintain a healthy lifestyle, nothing seems to help. I saw an article recently […] and was wondering if there might be a metabolic issue that is creating some of the weight gain?
Answer: One basic issue is that the pheochromocytoma caused a degree of hypermetabolism that has now disappeared. The excess production of epinephrine increased caloric utilization in a pathologic way, and you are now back to a “normal” metabolism that seems relatively slow. Unfortunately, you must adapt to the new normal, and diet and exercise to bring the weight down. Eventually, you should be able to reach a new stability.
Q&A from June, 2016
Question: I was on corticosteroids (6 mg Entocort) to treat Crohn’s disease. The course was supposed to be three months, but I found it impossible to taper off at that time. I was diagnosed with secondary adrenal insufficiency after 15 months on steroids. It took two years to taper off steroids in total; eight months of dedicated effort to get off of them! It sucked. My cortisol is back to normal (19 at last measure, up from 6 or 7 at the lowest), and stimulates up to 31. I’ve been off steroids now for seven months. About how long is the feeling like crap supposed to last?
Answer: With the apparent restoration of good adrenal function, there may still be some residual sense of mild adrenal insufficiency symptoms, such as fatigue and low appetite that may remain for a few more months. Keep in mind, however, that symptoms may also be due to the underlying Crohn’s disease, as well as other medical issues. Discuss all this with your doctor, and make sure nothing else is going on.
Question: Is it possible for high cortisol levels to exacerbate yeast infections?
Answer: Yes, high levels of cortisol or steroid therapy can exacerbate Candida and other fungal infections. It can be a significant complication of Cushing’s syndrome. This is due to the suppression of the immune system from high levels of glucocorticoids. It does not happen with normal replacement doses used for Addison’s disease.
Question: I have been working for the USPS for 12 years, all indoors. I recently made the switch to letter carrier and was wondering if you know of any research or any information about heat, the sun and so on. I live in New Mexico and summers are always in the high 90’s and I just want to better prepare myself for summer if I can. I have tried looking on line but only found anecdotal and hearsay into about Addison’s and the sun. So I would like to find more clinical info. Any help would be grateful!
Answer: The recommendations really apply to anyone exposed to the heat. Wear a hat, wear loose clothing, and stay well hydrated. Assuming secondary adrenal insufficiency rather that primary, dehydration is less of a threat. Although salt loss is less of an issue for people with secondary adrenal insufficiency, I would add salty foods or snacks if lightheadedness or dizziness is a common occurrence. Extra glucocorticoid doses are needed only if severe stress symptoms occur, including nausea, cramping and profound fatigue.
Question: I have been researching this medical condition as my 15-year-old niece was diagnosed with it a year ago. The tumors found on her adrenal glands were found to be benign and were never removed. All of the research I have obtained indicates that when tumors are found, whether or not they are benign, they are removed immediately. Is this correct? Also in this case where the tumors were found to be benign, would this mean that this is NOT considered to be a rare form of cancer?
Answer: If the diagnosis of pheochromocytoma is confirmed, the tumors should be removed because of the risk of severe episodes of high blood pressure. Most pheos are benign. If pheos are found in both adrenals, especially in a young person, there is a high probability that this is a genetic disorder. The endocrinologist should do genetic testing for familial pheochromocytoma and MEN 2.
Answer: With the apparent restoration of good adrenal function, there may still be some residual sense of mild adrenal insufficiency symptoms, such as fatigue and low appetite that may remain for a few more months. Keep in mind, however, that symptoms may also be due to the underlying Crohn’s disease, as well as other medical issues. Discuss all this with your doctor, and make sure nothing else is going on.
Question: Is it possible for high cortisol levels to exacerbate yeast infections?
Answer: Yes, high levels of cortisol or steroid therapy can exacerbate Candida and other fungal infections. It can be a significant complication of Cushing’s syndrome. This is due to the suppression of the immune system from high levels of glucocorticoids. It does not happen with normal replacement doses used for Addison’s disease.
Question: I have been working for the USPS for 12 years, all indoors. I recently made the switch to letter carrier and was wondering if you know of any research or any information about heat, the sun and so on. I live in New Mexico and summers are always in the high 90’s and I just want to better prepare myself for summer if I can. I have tried looking on line but only found anecdotal and hearsay into about Addison’s and the sun. So I would like to find more clinical info. Any help would be grateful!
Answer: The recommendations really apply to anyone exposed to the heat. Wear a hat, wear loose clothing, and stay well hydrated. Assuming secondary adrenal insufficiency rather that primary, dehydration is less of a threat. Although salt loss is less of an issue for people with secondary adrenal insufficiency, I would add salty foods or snacks if lightheadedness or dizziness is a common occurrence. Extra glucocorticoid doses are needed only if severe stress symptoms occur, including nausea, cramping and profound fatigue.
Question: I have been researching this medical condition as my 15-year-old niece was diagnosed with it a year ago. The tumors found on her adrenal glands were found to be benign and were never removed. All of the research I have obtained indicates that when tumors are found, whether or not they are benign, they are removed immediately. Is this correct? Also in this case where the tumors were found to be benign, would this mean that this is NOT considered to be a rare form of cancer?
Answer: If the diagnosis of pheochromocytoma is confirmed, the tumors should be removed because of the risk of severe episodes of high blood pressure. Most pheos are benign. If pheos are found in both adrenals, especially in a young person, there is a high probability that this is a genetic disorder. The endocrinologist should do genetic testing for familial pheochromocytoma and MEN 2.
Q&A from September, 2016
Question: Do you have any guidance for the use of melatonin, as an Addison’s disease patient?
Answer: Melatonin is safe in Addison’s disease. Not everyone responds, and it usually takes 2 or 3 days for it to work, but I recommend it as a safe sleeping aid.
Question: Can people with adrenal insufficiency take NSAIDS (non-steroidal anti-inflammatory drugs)?
Answer: Non-steroidal anti-inflammatory drugs are safe for people with adrenal insufficiency. They should observe the usual cautions that any person should follow: avoid them if you have significant kidney disease or hypertension, significant acid-peptic symptoms or disease, and understand that they will negate any benefit from low dose aspirin on heart disease prevention. Always try to take them for a limited time.
Question: What is your medication guidance regarding wisdom teeth extractions for AI patients?
Answer: Steroid coverage for wisdom teeth extraction depends on the type of anesthesia being used and the expected degree of post-op pain. If general anesthesia is needed, I would suggest IV hydrocortisone 50 mg to be given at the time of anesthesia. If local anesthesia is used, oral hydrocortisone 20 mg before the procedure should be sufficient. Post-op, extra oral hydrocortisone of 10 to 20 mg can be added a few hours later, depending on the severity of pain.
Question: Hi, can someone please help me locate the truth about whether a 24-hour urine catch test for cortisol is valid? My endo is trying to prove that I’m on too much HC, and insurance isn’t letting me switch right now.
Answer: Generally, I don’t think measuring urine cortisol is very useful in the management of adrenal insufficiency. However, if there is a particular discrepancy between the dosage and the clinical effect, an elevated 24-hour urine-free cortisol would clarify whether the dose is getting into the blood stream appropriately.
Answer: Melatonin is safe in Addison’s disease. Not everyone responds, and it usually takes 2 or 3 days for it to work, but I recommend it as a safe sleeping aid.
Question: Can people with adrenal insufficiency take NSAIDS (non-steroidal anti-inflammatory drugs)?
Answer: Non-steroidal anti-inflammatory drugs are safe for people with adrenal insufficiency. They should observe the usual cautions that any person should follow: avoid them if you have significant kidney disease or hypertension, significant acid-peptic symptoms or disease, and understand that they will negate any benefit from low dose aspirin on heart disease prevention. Always try to take them for a limited time.
Question: What is your medication guidance regarding wisdom teeth extractions for AI patients?
Answer: Steroid coverage for wisdom teeth extraction depends on the type of anesthesia being used and the expected degree of post-op pain. If general anesthesia is needed, I would suggest IV hydrocortisone 50 mg to be given at the time of anesthesia. If local anesthesia is used, oral hydrocortisone 20 mg before the procedure should be sufficient. Post-op, extra oral hydrocortisone of 10 to 20 mg can be added a few hours later, depending on the severity of pain.
Question: Hi, can someone please help me locate the truth about whether a 24-hour urine catch test for cortisol is valid? My endo is trying to prove that I’m on too much HC, and insurance isn’t letting me switch right now.
Answer: Generally, I don’t think measuring urine cortisol is very useful in the management of adrenal insufficiency. However, if there is a particular discrepancy between the dosage and the clinical effect, an elevated 24-hour urine-free cortisol would clarify whether the dose is getting into the blood stream appropriately.
Q&A from December, 2016
Question: Someone on one of my support forums gave me your site to contact because of recurring issues with ACTH levels. I am a 43-year-old female that was diagnosed with Cushing’s syndrome due to both an adrenal adenoma as well as a pituitary adenoma. In 2009, I had two surgeries on my pituitary to remove the adenoma. When ACTH levels were not suppressed they did a bilateral adrenalectomy. I was doing great up until late this year. Pigment started getting really dark, fatigue has sat in to a great extent, stomach pain, diarrhea, vomiting on many of the days out of a week. Headaches have returned with some double and sometimes blurry vision. I am not losing weight again, and my mood swings are back, and I am very depressed. My endocrinologist did checks on my test, and the first one was 496 at 9:00 am and the second test he did was a suppression test, with levels only going down to 240 at 8:00 am. I do not know what to demand at this point. I am once again feeling horrible and only know that as time goes on I will be worse. Can you please suggest a plan of action for me?
Answer: The elevated ACTH levels suggest that she may be developing Nelson’s syndrome. This is a complication of the management of Cushing’s disease (pituitary origin) with bilateral adrenalectomy. The remaining pituitary adenoma that was causing the Cushing’s, and was unsuccessfully resected, may now be growing and making larger amounts of ACTH than ever. If that is the diagnosis, it can be quite serious if not treated. The pituitary tumor may grow rapidly, causing compression of the remaining pituitary gland, leading to deficiencies of other pituitary hormones. The effect can be hypothyroidism, growth hormone deficiency, hypogonadism and sometimes diabetes insipidus. Also, if the tumor is large, it can compress the optic chiasm and cause loss of vision and headaches. The endocrinologist should evaluate all of these possibilities with lab tests, visual fields and a repeat pituitary MRI. If Nelson’s syndrome is diagnosed, therapy with medication (cabergoline and Sandostatin), radiation therapy or repeat pituitary surgery to remove the tumor can be successful. Appropriate replacement treatment for the surgical Addison’s disease with hydrocortisone and fludrocortisone is essential. If hypopituitarism is present, replacement of the missing hormones is also a vital part of the management.
Question: I have Addison’s disease and hypothyroidism. Is it safe for me to be a live kidney donor for my brother?
Answer: Neither Addison’s disease or hypothyroidism would automatically eliminate a person from being a donor. Eligibility would depend on the general good health of the individual and any history of instability in health matters, such as blood pressure. The safety of undergoing kidney donation surgery is the same as other major surgery procedures.
Question: I have Addison’s disease, and my doctor is trying me on a generic for Lyrica. It makes me very dizzy, so I am still on 1 instead of the gradual 4 he has prescribed. Has anyone else used this?
Answer: Lyrica is used primarily for painful neuropathy and can cause fatigue and dizziness. It is not prescribed for adrenal disease, but may be used as a part of pain management when there is a coincidental pain issue, especially neuropathy. Side effects must be discussed with the prescribing doctor and adjustments in the dosage may be required.
Question: Is it possible to have a low aldosterone level (close to the bottom of the scale) and low renin, but to have normal cortisol, electrolytes, and ACTH test? I suffer from low blood pressure. Can low aldosterone cause swelling of the submandibular salivary gland (the swelling is non-inflammatory, it is painless, bilateral and permanent), or abnormal fat distribution in the upper body? My lower body doesn’t look swollen. And can low aldosterone somehow cause multiple aphthae/erosions/ulcers in the small intestine (that isn’t Crohn’s or Celiac disease)?
Answer: Hyporeninemic hypoaldosteronism is fairly common. It is caused by a defect in the kidneys. The signs are low blood pressure, a further drop in blood pressure on standing, and high potassium. In contrast to Addison’s disease, people with this syndrome have normal levels of cortisol and ACTH. The treatment is replacement fludrocortisone (Florinef) without the need for hydrocortisone. Many people with this syndrome have diabetes mellitus. Even if blood sugars are normal, the physical features of insulin resistance (the major cause of adult onset diabetes) include increased body fat in the middle of the body as well as swelling of the salivary glands. It would not generally include ulcers or changes in the small bowel.
Answer: The elevated ACTH levels suggest that she may be developing Nelson’s syndrome. This is a complication of the management of Cushing’s disease (pituitary origin) with bilateral adrenalectomy. The remaining pituitary adenoma that was causing the Cushing’s, and was unsuccessfully resected, may now be growing and making larger amounts of ACTH than ever. If that is the diagnosis, it can be quite serious if not treated. The pituitary tumor may grow rapidly, causing compression of the remaining pituitary gland, leading to deficiencies of other pituitary hormones. The effect can be hypothyroidism, growth hormone deficiency, hypogonadism and sometimes diabetes insipidus. Also, if the tumor is large, it can compress the optic chiasm and cause loss of vision and headaches. The endocrinologist should evaluate all of these possibilities with lab tests, visual fields and a repeat pituitary MRI. If Nelson’s syndrome is diagnosed, therapy with medication (cabergoline and Sandostatin), radiation therapy or repeat pituitary surgery to remove the tumor can be successful. Appropriate replacement treatment for the surgical Addison’s disease with hydrocortisone and fludrocortisone is essential. If hypopituitarism is present, replacement of the missing hormones is also a vital part of the management.
Question: I have Addison’s disease and hypothyroidism. Is it safe for me to be a live kidney donor for my brother?
Answer: Neither Addison’s disease or hypothyroidism would automatically eliminate a person from being a donor. Eligibility would depend on the general good health of the individual and any history of instability in health matters, such as blood pressure. The safety of undergoing kidney donation surgery is the same as other major surgery procedures.
Question: I have Addison’s disease, and my doctor is trying me on a generic for Lyrica. It makes me very dizzy, so I am still on 1 instead of the gradual 4 he has prescribed. Has anyone else used this?
Answer: Lyrica is used primarily for painful neuropathy and can cause fatigue and dizziness. It is not prescribed for adrenal disease, but may be used as a part of pain management when there is a coincidental pain issue, especially neuropathy. Side effects must be discussed with the prescribing doctor and adjustments in the dosage may be required.
Question: Is it possible to have a low aldosterone level (close to the bottom of the scale) and low renin, but to have normal cortisol, electrolytes, and ACTH test? I suffer from low blood pressure. Can low aldosterone cause swelling of the submandibular salivary gland (the swelling is non-inflammatory, it is painless, bilateral and permanent), or abnormal fat distribution in the upper body? My lower body doesn’t look swollen. And can low aldosterone somehow cause multiple aphthae/erosions/ulcers in the small intestine (that isn’t Crohn’s or Celiac disease)?
Answer: Hyporeninemic hypoaldosteronism is fairly common. It is caused by a defect in the kidneys. The signs are low blood pressure, a further drop in blood pressure on standing, and high potassium. In contrast to Addison’s disease, people with this syndrome have normal levels of cortisol and ACTH. The treatment is replacement fludrocortisone (Florinef) without the need for hydrocortisone. Many people with this syndrome have diabetes mellitus. Even if blood sugars are normal, the physical features of insulin resistance (the major cause of adult onset diabetes) include increased body fat in the middle of the body as well as swelling of the salivary glands. It would not generally include ulcers or changes in the small bowel.
