NADF News® Q & A – 2011
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, 2011
Question: Can you explain your term "salt waster"? if you explained it on your web page I missed it, I think you just labeled it without explaining what it means…it sounds like you are saying that salt is being pushed out of the body due to a lack of aldosterone production…is that correct? And if so does the salt leave the body through the bloodstream then kidneys?
Answer: People who have Addison’s disease are salt wasters due to the deficiency of aldosterone. This hormone signals the kidneys to retain sodium (salt) to maintain a normal volume of fluid in the blood. With a deficiency, Addisonians “waste” too much sodium from excretion in the urine, have a lower blood volume and lower blood pressure.
Question: In response to an NADF bulk e-mail sent out to members regarding emergency injections of hydrocortisone, a mother asked: Q. What is the dosage for children, 11 yrs old 100#?
Answer: The emergency dosage of hydrocortisone 100 mg is purposely a higher than necessary dose, but it is safe and covers all contingencies. Children and small adults would get by with a lower dose, but would not be harmed by the 100 mg dose set for adults.
Question: I visited a fire station near my home and inquired what treatment would they administer for low blood pressure due to adrenal insufficiency. The paramedic advised that they would administer Dopamine in order to bring the blood pressure up. My question is would DOPAMINE work on a person with Addision’s?
Answer: Dopamine acts as a vasoconstrictor to raise blood pressure, and would work in a Addisonian. However, it would not work as well as the recommended IV saline and hydrocortisone, because the cause of low blood pressure in an Addisonian is low blood volume.
Question: Do you have any special advice for menopausal adrenal insufficient women dealing with sweats?
Answer: Treatment for menopausal flushes and sweats remains a problem. The only therapy that works is hormone replacement with estrogen, but this introduces risks, including an increase in breast cancer risk. If the symptoms are severe, a low dosage of hormone replacement may be useful for a short period of time – like 6 to 12 months, using the lowest dose that works, and tapering off slowly (this assumes no current breast or other contraindication). Over the counter remedies are generally plant estrogens that rarely help. Some antidepressant drugs, such as Effexor have been shown to help, but can have side effects, including weight gain. For most women it is best to tough it out. Addisonian women will, indeed, sometimes need a little bit of extra hydrocortisone for stressful episodes, but be careful to avoid taking too much to cover the stress and wind up with weight gain and other features of cortisol excess.
Answer: People who have Addison’s disease are salt wasters due to the deficiency of aldosterone. This hormone signals the kidneys to retain sodium (salt) to maintain a normal volume of fluid in the blood. With a deficiency, Addisonians “waste” too much sodium from excretion in the urine, have a lower blood volume and lower blood pressure.
Question: In response to an NADF bulk e-mail sent out to members regarding emergency injections of hydrocortisone, a mother asked: Q. What is the dosage for children, 11 yrs old 100#?
Answer: The emergency dosage of hydrocortisone 100 mg is purposely a higher than necessary dose, but it is safe and covers all contingencies. Children and small adults would get by with a lower dose, but would not be harmed by the 100 mg dose set for adults.
Question: I visited a fire station near my home and inquired what treatment would they administer for low blood pressure due to adrenal insufficiency. The paramedic advised that they would administer Dopamine in order to bring the blood pressure up. My question is would DOPAMINE work on a person with Addision’s?
Answer: Dopamine acts as a vasoconstrictor to raise blood pressure, and would work in a Addisonian. However, it would not work as well as the recommended IV saline and hydrocortisone, because the cause of low blood pressure in an Addisonian is low blood volume.
Question: Do you have any special advice for menopausal adrenal insufficient women dealing with sweats?
Answer: Treatment for menopausal flushes and sweats remains a problem. The only therapy that works is hormone replacement with estrogen, but this introduces risks, including an increase in breast cancer risk. If the symptoms are severe, a low dosage of hormone replacement may be useful for a short period of time – like 6 to 12 months, using the lowest dose that works, and tapering off slowly (this assumes no current breast or other contraindication). Over the counter remedies are generally plant estrogens that rarely help. Some antidepressant drugs, such as Effexor have been shown to help, but can have side effects, including weight gain. For most women it is best to tough it out. Addisonian women will, indeed, sometimes need a little bit of extra hydrocortisone for stressful episodes, but be careful to avoid taking too much to cover the stress and wind up with weight gain and other features of cortisol excess.
Q&A from June, 2011
Question: I would like info on shingles and Addison's disease. I have heard different views on taking the shingles vaccine. I have heard from physician that since I take steroids (hydrocortisone), that I should not take the shingles vaccine. Other doctors felt taking the vaccine was fine, but did not say why or why not. I have also called a local hospital (one of U.S. News and World Report’s top 10) regarding this. Their view was a resounding no. I would like the current feeling on the shingles vaccine for Addison’s disease patients…the whys and why nots. I do not want to make a mistake.
Answer: I am neutral on advising people to get the shingles vaccination. There is no reason an Addisonian should have any reaction to the vaccination, or have any problem getting the full benefit. The use of replacement steroids does not prevent its use. The basic issue is the likelihood of getting shingles versus the expense of getting the shot. Anyone who is fearful of shingles or wants to have the vaccination should go ahead and get it. This is in contrast to influenza immunization, where I strongly favor universal use of the shots because the benefit is very high and the cost is minimal.
Question: I have had Addison’s for about 6 years now and have been taking vitamin D3 for about 2 years. I recently started taking 10,000 IU a day. I never really thought about how much that was until I did some research about it. Some research says that is not too much. Others say it is too much. I am 48 years old and my doctor told me the other day that since 2007 I have had 6% bone loss. So is 10,000 IU vitamin D3 too much? If so, how much should I take per day? Thank you.
Answer: First, the vitamin D issue has nothing to do with the Addison’s disease. There has been much controversy about vitamin D lately. Low levels of vitamin D from lack of sunlight, dietary abnormalities, or from a relative lack of absorption of vitamin D from the intestines are quite common. Recent improvements in the accuracy of laboratory measurements of D allow us to assess vitamin D deficiency much better than a few years ago. Most labs will report a level of 25-hydroxy D (the best way to look at it) below 30 as abnormal. Levels below 30 can contribute to decreased absorption of calcium and a tendency toward osteoporosis, which will increase the risk of fracture. If osteoporosis is found, a measurement of vitamin D should be made. Supplements of vitamin D to bring the blood level up to normal should be given. Although some would aim just to bring the level to above 30, I think it should be over 40 in someone with osteoporosis. Most people can achieve these levels with vitamin D doses of 1000 to 2000 units per day, but some require much higher doses, especially if there is bowel malabsorption. The important point is to check the blood level of D as well as calcium to assess the effect of any regimen.
Question: I was diagnosed with secondary adrenal insufficiency in Dececember of 1992 and have done very well on the hydrocortisone. My usual dosage is 20 mg in the AM and 10 mg in the PM. I am also hypopit and take 100 mcg of levoxyl daily. This was all due to removal of a pituitary microandemona in July of 1981 through an infertility workup. Fast forward to last November when I was diagnosed with stage 4 lung cancer (and never smoked). I have been given 14 whole brain radiations and one radio surgery to the brain. It has spread to the brain and liver. I was on Tarceva for a little over a month, but had steadily felt weakened, wobbly legs, almost passed out 2 or 3 times, (actually I did pass out once but then realized I also had a bladder infection), short of breath, etc. I was taken off Tarceva a week ago and feel better, but also saw my endocrinologist last Friday, and I was taking too much thyroid medicine, thus the reduction to 100 mcg every day (it used to be 4 days a week at that level and 3 days at 112 mcg). My endocrinologist has never treated a cancer patient, and we trying to find the best dosage for the hydrocortisone. Do you have any thoughts on this? Thank you for all you do for NADF.
Answer: Although I cannot give specific recommendations about your care, I can suggest that you and your endocrinologist try to adjust the hydrocortisone dose according to your symptoms, just as you did before the cancer. This can be tricky, however, because the Tarceva itself can cause symptoms that resemble adrenal insufficiency, including fatigue, nausea, weakness and diarrhea. Since these symptoms can respond to additional doses of hydrocortisone, be aggressive about using it, raising the dose by 10 or 20 mg as needed. One other resource you have is the oncologist. Although your endocrinologist may not have experience with cancer, your oncologist does have experience with steroids, so communicate with both doctors.
Question: Late December, 2010, he (her son) suffered a heart attack that came pretty close to claiming his life. He underwent surgery and has been progressing well ever since. The obstacles we are trying to overcome is the interaction between his medications, which his cardiologist and his endocrinologists are working on, and his diet. The no-salt for the heart and the salt for the Addison’s is proving to be a challenge. I was wondering if your organization has any information for this type of situation that could aid in his recovering and return some ‘normalcy’ to this life. Any information you can provide would be helpful. Thank you in advance for your work in this field and for the information you already provide.
Answer: The balance between the need for salt or salt retaining medication (such as fludrocortisone) and the abnormal salt and fluid retention that can occur with congestive heart failure or essential hypertension can be difficult. There are no absolute formulas here. The most important thing for the endocrinologist and cardiologist to do is to look at what is happening to the patient. Although normally an Addisonian will need fludrocortisone to maintain fluid volume and prevent potassium retention, if the heart is not pumping normally, this medication might be excessive in normal doses or may be harmful even in small doses. The goal of therapy is to maintain normal blood pressure, normal sodium and potassium levels, avoid fluid overload, but also avoid hypotension and other signs of adrenal insufficiency. One very useful test is plasma renin, which will be elevated in Addisonians on inadequate salt and fludrocortisone intake, but if suppressed would confirm that the patient is fluid overloaded and needs less salt and fludrocortisone.
Answer: I am neutral on advising people to get the shingles vaccination. There is no reason an Addisonian should have any reaction to the vaccination, or have any problem getting the full benefit. The use of replacement steroids does not prevent its use. The basic issue is the likelihood of getting shingles versus the expense of getting the shot. Anyone who is fearful of shingles or wants to have the vaccination should go ahead and get it. This is in contrast to influenza immunization, where I strongly favor universal use of the shots because the benefit is very high and the cost is minimal.
Question: I have had Addison’s for about 6 years now and have been taking vitamin D3 for about 2 years. I recently started taking 10,000 IU a day. I never really thought about how much that was until I did some research about it. Some research says that is not too much. Others say it is too much. I am 48 years old and my doctor told me the other day that since 2007 I have had 6% bone loss. So is 10,000 IU vitamin D3 too much? If so, how much should I take per day? Thank you.
Answer: First, the vitamin D issue has nothing to do with the Addison’s disease. There has been much controversy about vitamin D lately. Low levels of vitamin D from lack of sunlight, dietary abnormalities, or from a relative lack of absorption of vitamin D from the intestines are quite common. Recent improvements in the accuracy of laboratory measurements of D allow us to assess vitamin D deficiency much better than a few years ago. Most labs will report a level of 25-hydroxy D (the best way to look at it) below 30 as abnormal. Levels below 30 can contribute to decreased absorption of calcium and a tendency toward osteoporosis, which will increase the risk of fracture. If osteoporosis is found, a measurement of vitamin D should be made. Supplements of vitamin D to bring the blood level up to normal should be given. Although some would aim just to bring the level to above 30, I think it should be over 40 in someone with osteoporosis. Most people can achieve these levels with vitamin D doses of 1000 to 2000 units per day, but some require much higher doses, especially if there is bowel malabsorption. The important point is to check the blood level of D as well as calcium to assess the effect of any regimen.
Question: I was diagnosed with secondary adrenal insufficiency in Dececember of 1992 and have done very well on the hydrocortisone. My usual dosage is 20 mg in the AM and 10 mg in the PM. I am also hypopit and take 100 mcg of levoxyl daily. This was all due to removal of a pituitary microandemona in July of 1981 through an infertility workup. Fast forward to last November when I was diagnosed with stage 4 lung cancer (and never smoked). I have been given 14 whole brain radiations and one radio surgery to the brain. It has spread to the brain and liver. I was on Tarceva for a little over a month, but had steadily felt weakened, wobbly legs, almost passed out 2 or 3 times, (actually I did pass out once but then realized I also had a bladder infection), short of breath, etc. I was taken off Tarceva a week ago and feel better, but also saw my endocrinologist last Friday, and I was taking too much thyroid medicine, thus the reduction to 100 mcg every day (it used to be 4 days a week at that level and 3 days at 112 mcg). My endocrinologist has never treated a cancer patient, and we trying to find the best dosage for the hydrocortisone. Do you have any thoughts on this? Thank you for all you do for NADF.
Answer: Although I cannot give specific recommendations about your care, I can suggest that you and your endocrinologist try to adjust the hydrocortisone dose according to your symptoms, just as you did before the cancer. This can be tricky, however, because the Tarceva itself can cause symptoms that resemble adrenal insufficiency, including fatigue, nausea, weakness and diarrhea. Since these symptoms can respond to additional doses of hydrocortisone, be aggressive about using it, raising the dose by 10 or 20 mg as needed. One other resource you have is the oncologist. Although your endocrinologist may not have experience with cancer, your oncologist does have experience with steroids, so communicate with both doctors.
Question: Late December, 2010, he (her son) suffered a heart attack that came pretty close to claiming his life. He underwent surgery and has been progressing well ever since. The obstacles we are trying to overcome is the interaction between his medications, which his cardiologist and his endocrinologists are working on, and his diet. The no-salt for the heart and the salt for the Addison’s is proving to be a challenge. I was wondering if your organization has any information for this type of situation that could aid in his recovering and return some ‘normalcy’ to this life. Any information you can provide would be helpful. Thank you in advance for your work in this field and for the information you already provide.
Answer: The balance between the need for salt or salt retaining medication (such as fludrocortisone) and the abnormal salt and fluid retention that can occur with congestive heart failure or essential hypertension can be difficult. There are no absolute formulas here. The most important thing for the endocrinologist and cardiologist to do is to look at what is happening to the patient. Although normally an Addisonian will need fludrocortisone to maintain fluid volume and prevent potassium retention, if the heart is not pumping normally, this medication might be excessive in normal doses or may be harmful even in small doses. The goal of therapy is to maintain normal blood pressure, normal sodium and potassium levels, avoid fluid overload, but also avoid hypotension and other signs of adrenal insufficiency. One very useful test is plasma renin, which will be elevated in Addisonians on inadequate salt and fludrocortisone intake, but if suppressed would confirm that the patient is fluid overloaded and needs less salt and fludrocortisone.
Q&A from September, 2011
Question: Since your adrenal glands help your memory, does that have any effect on why I can’t remember things and how will it affect us later? I was watching “60 Minutes” and they had this interesting story on people who have special memories and they mentioned your adrenal glands having a lot to do with it, so I was just curious if I was just losing it or I “have a good reason”.
Answer: Unfortunately there is not much to say. Certainly, when there are extremes of cortisol levels – both high and low, there can be mood and cognitive changes, but they should improve with treatment. We know that people with severe depression have a blunted ACTH-cortisol response, but this is not generally found in people with memory loss. To my knowledge, the neurotransmitters involved with memory are not directly influenced by cortisol. There is much work being done in the field of memory and its treatment and hopefully new therapies will be found soon.
Question: I have adrenal insufficiency, diagnosed about 5 years ago. I always have a problem with doctors and health care professionals not knowing much about this disease and especially not knowing the protocols for adrenal insufficient patients when running tests and procedures. My gastroenterologist has ordered a Gastrografin Enema for me. I don’t know much about this test. I have asked the radiologist questions, but he really can’t help me in finding out if I will need any kind of hydration or steroids during this test. Can you help me out? Are you aware of any protocol that needs to be followed for this test, for me?
Answer: An enema to look at the colon is not a very significant stress. I would expect that you might need to be on a liquid diet for a day, but as long as you are well hydrated at the time of the procedure, it is unlikely that extra IV fluids or steroids would be needed. However, if you are dealing with any pain or serious discomfort, a slight increase in oral hydrocortisone before the procedure would be safe.
Question: A member is wondering what is recommended for high anxiety in patients with Addison's disease. She is on clonazepam and it works well for her, but she is afraid of long-term addiction. She has heard that herbs such as Holy Basil help, but doesn’t want to try herbs unless there is documentation of herbs helping Addison’s patients.
Answer: I am not in favor of using over-the-counter herbal therapies for anxiety or any other problems. These therapies are not regulated by the FDA. Their origins, purity, safety and efficacy have not been established for anyone, let alone someone with a specific condition like Addison’s disease. Avoid them, but speak to your own doctor about management of the anxiety symptoms. Psychotherapy, behavior modification and some prescription drugs can be used safely and under supervision.
Question: Several years ago my doctor prescribed a statin drug to bring down my cholesterol. I started with Simvastatin which caused instant muscle and joint soreness. My doctor switched me to Pravastatin 20 mg, which seemed to work for about a year. Eventually my joints and muscles gradually became so sore that I had difficulty moving my legs and arms and it got progressively worse. I stopped taking the statin about three months ago, on my own, and have improved 90%. As an alternative, I am taking two fish oil capsules per day on my own. I will make an appointment with my endocrinologist soon for a blood test and routine physical and discuss the statin side effects with him. I have discovered many other people with similar problems with statins through my research on the internet. Do you have any knowledge of side effects of statins on Addisonians?
Answer: The muscle cramps from statins are quite common and have nothing to do with Addison' disease. I see this frequently in all patients, with no increase in incidence in people with adrenal insufficiency. It is appropriate to try other statins, as you have done. The adjunct use of coenzyme Q-10 has been advocated for several years for those people who do develop muscle symptoms. In my experience it works some of the time, but not always. It seems very safe, so there is no reason not to try it. As far as fish oil versus statins, they are not equivalent. Statins are used primarily to reduce elevated LDL, the bad cholesterol. Fish oil does not do this. It can be useful for people with elevated triglycerides and low HDL, the good cholesterol. Fish oil lowers triglycerides while raising HDL. It is commonly used in conjunction with statins when both effects are desired. But if high LDL is a real issue as a risk factor for vascular disease, fish oil alone will not be adequate.
Answer: Unfortunately there is not much to say. Certainly, when there are extremes of cortisol levels – both high and low, there can be mood and cognitive changes, but they should improve with treatment. We know that people with severe depression have a blunted ACTH-cortisol response, but this is not generally found in people with memory loss. To my knowledge, the neurotransmitters involved with memory are not directly influenced by cortisol. There is much work being done in the field of memory and its treatment and hopefully new therapies will be found soon.
Question: I have adrenal insufficiency, diagnosed about 5 years ago. I always have a problem with doctors and health care professionals not knowing much about this disease and especially not knowing the protocols for adrenal insufficient patients when running tests and procedures. My gastroenterologist has ordered a Gastrografin Enema for me. I don’t know much about this test. I have asked the radiologist questions, but he really can’t help me in finding out if I will need any kind of hydration or steroids during this test. Can you help me out? Are you aware of any protocol that needs to be followed for this test, for me?
Answer: An enema to look at the colon is not a very significant stress. I would expect that you might need to be on a liquid diet for a day, but as long as you are well hydrated at the time of the procedure, it is unlikely that extra IV fluids or steroids would be needed. However, if you are dealing with any pain or serious discomfort, a slight increase in oral hydrocortisone before the procedure would be safe.
Question: A member is wondering what is recommended for high anxiety in patients with Addison's disease. She is on clonazepam and it works well for her, but she is afraid of long-term addiction. She has heard that herbs such as Holy Basil help, but doesn’t want to try herbs unless there is documentation of herbs helping Addison’s patients.
Answer: I am not in favor of using over-the-counter herbal therapies for anxiety or any other problems. These therapies are not regulated by the FDA. Their origins, purity, safety and efficacy have not been established for anyone, let alone someone with a specific condition like Addison’s disease. Avoid them, but speak to your own doctor about management of the anxiety symptoms. Psychotherapy, behavior modification and some prescription drugs can be used safely and under supervision.
Question: Several years ago my doctor prescribed a statin drug to bring down my cholesterol. I started with Simvastatin which caused instant muscle and joint soreness. My doctor switched me to Pravastatin 20 mg, which seemed to work for about a year. Eventually my joints and muscles gradually became so sore that I had difficulty moving my legs and arms and it got progressively worse. I stopped taking the statin about three months ago, on my own, and have improved 90%. As an alternative, I am taking two fish oil capsules per day on my own. I will make an appointment with my endocrinologist soon for a blood test and routine physical and discuss the statin side effects with him. I have discovered many other people with similar problems with statins through my research on the internet. Do you have any knowledge of side effects of statins on Addisonians?
Answer: The muscle cramps from statins are quite common and have nothing to do with Addison' disease. I see this frequently in all patients, with no increase in incidence in people with adrenal insufficiency. It is appropriate to try other statins, as you have done. The adjunct use of coenzyme Q-10 has been advocated for several years for those people who do develop muscle symptoms. In my experience it works some of the time, but not always. It seems very safe, so there is no reason not to try it. As far as fish oil versus statins, they are not equivalent. Statins are used primarily to reduce elevated LDL, the bad cholesterol. Fish oil does not do this. It can be useful for people with elevated triglycerides and low HDL, the good cholesterol. Fish oil lowers triglycerides while raising HDL. It is commonly used in conjunction with statins when both effects are desired. But if high LDL is a real issue as a risk factor for vascular disease, fish oil alone will not be adequate.
Q&A from December, 2011
Question: I am a 56-year-old female who has had secondary pituitary adrenal insufficiency for 11 years. My supplemental steroids is prednisone. I have developed cataracts in both eyes and now I need surgery to remove them. My endocrinologist is recommending 100 cc of Solu Medrol pre-surgery and 20 mg of oral prednisone after and for 2 days, then 10 mg the third day. He will then wean me from there. Does this seem like an appropriate dose for the cataract surgery? He had me receive the IV steroids for endo/colonoscopies and for the removal of my lateral meniscus. Some of my past medical history includes MRSA of both eyes 9 years ago, blepharitis of both eyes with allergies, severe asthma, bilateral hip replacements, osteoporosis and sleep apnea. Thank you for your input.
Answer: I think the suggested stress dosage of steroids is quite excessive for cataract surgery. This does not involve general anesthesia and is very fast and not much of a stress on the body. I usually suggest no extra steroids for cataract surgery, or at most an extra 5 mg of prednisone (or an extra 20 mg of hydrocortisone for an Addisonian) to be taken orally before the procedure.
Question: Our senior center in Attleboro, MA is giving free shingles shots. My husband and I have both had the shingles. He had a serious case, and mine was mild. I am the one with Addison’s disease. (Schmidt’s syndrome). Should we get the shingles shot or is it unnecessary?
Answer: Having had shingles in the past, the immunization shot will not give you any more immunity than you already have.
Question: Are you still finding in 2011 that the shingles vaccine is safe for people with Addison's disease? Have you found that such patients always suffer side effects from it, for example you can always expect to have a fever or headache from it? As I live alone, I need to be prepared. I know a friend who is suffering severe nerve damage from having shingles, but I am still hesitating on whether to be vaccinated or not!
Answer: No. I am not aware of any increased incidence of side effects from the shingles vaccination in Addison’s patients.
Question: Is it okay to stay on fludrocortisone acetate while undergoing the ACTH stimulation test?
Answer: It is OK to stay on fludrocortisone while doing a Cortrosyn test.
Answer: I think the suggested stress dosage of steroids is quite excessive for cataract surgery. This does not involve general anesthesia and is very fast and not much of a stress on the body. I usually suggest no extra steroids for cataract surgery, or at most an extra 5 mg of prednisone (or an extra 20 mg of hydrocortisone for an Addisonian) to be taken orally before the procedure.
Question: Our senior center in Attleboro, MA is giving free shingles shots. My husband and I have both had the shingles. He had a serious case, and mine was mild. I am the one with Addison’s disease. (Schmidt’s syndrome). Should we get the shingles shot or is it unnecessary?
Answer: Having had shingles in the past, the immunization shot will not give you any more immunity than you already have.
Question: Are you still finding in 2011 that the shingles vaccine is safe for people with Addison's disease? Have you found that such patients always suffer side effects from it, for example you can always expect to have a fever or headache from it? As I live alone, I need to be prepared. I know a friend who is suffering severe nerve damage from having shingles, but I am still hesitating on whether to be vaccinated or not!
Answer: No. I am not aware of any increased incidence of side effects from the shingles vaccination in Addison’s patients.
Question: Is it okay to stay on fludrocortisone acetate while undergoing the ACTH stimulation test?
Answer: It is OK to stay on fludrocortisone while doing a Cortrosyn test.
