NADF NEWS® Q & A – 2022
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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 September 2022
Question: Is there a way to know if I am on the correct dosage of Florinef? I have PAI (since 1988) and wonder is there a blood test? Or is it if I feel these symptoms mentioned in your presentation that could indicate I am on too low a dose & talk to my doctor?
Answer: Fludrocortisone is a replacement for aldosterone, the adrenal hormone that signals the kidneys to retain sodium and thereby increase blood volume and blood pressure. While retaining sodium, it causes the excretion of potassium into the urine. In assessing the proper dosage of fludrocortisone in people with primary adrenal insufficiency, we look at the following: blood pressure - is there a postural drop on standing, is the BP too high; is the serum potassium normal or too high; is there ankle swelling from retention of too much sodium; and we have the very useful blood test for plasma renin. Renin is made in the kidneys, reflecting blood volume. If the volume is too low, renin is elevated. If the volume is too high, renin is suppressed. Once an adjustment in fludrocortisone dosage is made, all these parameters should be assessed again at the next visit.
Question: I have Addison’s and Type 1 diabetes, in addition to Hashimoto’s. I have always had an emergency kit to inject dexamethasone in case of a crisis. Now I have glucagon for an emergency injection for low blood sugar. I asked my endo - if I am found unconscious with no other clue - give dexamethasone injection, then check if low blood sugar, give glucagon? My endo said just give the glucagon, and let the ER provide the steroids when I get to the hospital. But my recent crisis was a good example of what many of us know - if we don’t know to give ourselves the emergency injection, we may not get it at all. I did not get admitted to ER in North Carolina for many hours and was too out of it to give myself the injection. That did not go well. Any advice welcome.
Answer: With the combination of Addison's disease, Hashimoto's thyroiditis and type 1 diabetes, the most likely cause of loss of consciousness would be hypoglycemia. Therefore, if found unconscious, I would recommend that someone give sc glucagon immediately. An adrenal crisis generally takes hours to develop, with significant symptoms, including nausea, vomiting, diarrhea, muscle cramps and fatigue. IM or SC steroids (usually hydrocortisone rather than dexamethasone) can be self administered or given by someone else if vomiting prevents the retention of the oral steroids. I basically agree with your endocrinologist. The issue of getting appropriate emergency management of your adrenal crisis is another matter. NADF strongly recommends wearing a MedicAlert bracelet or necklace indicating adrenal insufficiency, carrying a NADF wallet card giving instructions, and most importantly, loudly insisting to the ER medical staff that you have adrenal insufficiency and are in an adrenal crisis.
Question: I'd be curious to know how many people with AI caused by an autoimmune disease also have other autoimmune diseases . . . particularly thyroid diseases? From my own clinical experience, at least 50% will develop autoimmune thyroid disease.
Answer: From my own clinical experience, at least 50% will develop autoimmune thyroid disease.
Question: What could be advice for someone who has experienced many adrenal crisis incidents over just the past 3 years (I've had it for 6 years this month.) I've been on hydrocortisone, prednisone, and am currently on a high dose of dexamethasone and have been on that high dose for two years. even with that, stress dosing when needed and doing other preventative measures my cortisol still hits the floor (.4 on average) to put me in the hospital.
Answer: It is difficult to determine what factors make you more prone to acute adrenal crises. Many factors could be involved, including occupation, family status that might expose you to more infections, other coexisting diseases, and the need for early recognition of the signs and symptoms that indicate that stress doses should be started immediately. I would recommend that you have an emergency Solu-Cortef vial and syringe, which might prevent the need for an ER visit in some situations. I am a bit puzzled about the switch to prednisone or high dose dexamethasone. If you have primary adrenal insufficiency, prednisone and dex have no mineralocorticoid activity. I assume you are taking adequate fludrocortisone. If not, your blood volume may be chronically low, keeping you too close to the threshold where blood pressure can drop and precipitate a crisis. Also, since you mention very low serum cortisol levels, keep in mind that when you are taking dexamethasone, the serum cortisol will be suppressed, so it will not be a useful test. Much better to go back to hydrocortisone.
Question: With regards to the Solu-Cortef injection, if vomiting is occurring, would that be sufficient to try to stay at home or would an ER visit be necessary due to possible dehydration?
Answer: If a person with Addison's disease is vomiting and can't hold down oral hydrocortisone, the Solu-Cortef injection may be sufficient if the vomiting stops and you can start to keep oral fluids and then hydrocortisone down. However, if the vomiting persists, or there are signs of low blood pressure or fever, a trip to the ER may still be necessary. Either way, the injection provides some immediate relief and reduces the overall risk of the acute adrenal crisis.
Question: Does anything (i.e., meds, etc.) impact plasma renin test? My results (normal or low) do not seem to match up with symptoms and doctors have not been much in favor of me taking fludrocortisone. I am currently taking 0.05mg daily.
Answer: Diuretics will increase renin, which is why they are inappropriate in Addison's disease, since they reduce blood volume. If your renin is normal to low, blood volume on your current dose of fludrocortisone is adequate. The dose of 0.05 mg is a common dose, along with appropriate hydrocortisone, which also has mineralocorticoid activity. If your blood pressure is high, the low renin suggests that you may be able to reduce the dose of fludrocortisone.
Question: I read recently that green tea is bad for Addison's Disease. Is this statement true; and, if so, why?
Answer: I have never seen any statement like that. To my knowledge, green tea is safe in normal quantities. It does have some caffeine, but less than coffee, which is also safe. Very large amounts of green tea might cause some liver inflammation, but that is not a specific issue with Addison's disease. Enjoy your green tea!
Question: I was diagnosed with Addison's Disease in 2004 and Hypothyroidism in the early 90s and my medication is stable for both diseases. I have been on a daily dose of 10 mg DHEA since 2005. I started experiencing hair loss last fall and have since been diagnosed with female pattern hair loss. I stopped the DHEA 10 mg a few months ago. I'd like to try to take Spironolactone for the hair loss as my dermatologist recommended this, but know this medication affects potassium. Is it safe for a woman with Addison's disease to take Spironolactone for hair loss?
Answer: Spironolactone is not a good idea in Addison's disease. It is a mild diuretic and does elevate potassium. Your doctor should check to see if your serum testosterone is high normal or elevated. If it is, a better medication than spironolactone would be finasteride. It blocks the metabolism of testosterone but does not elevate potassium. As a woman, the dose is a fraction of the dose for men with enlarged prostate. I usually use 2.5 mg every other day. Also, add biotin, a safe vitamin that is good for hair and nails.
Question: I have SAI and was diagnosed in 2009. My ACTH was very low. Although it is said that with SAI your sodium levels don't drop and you don't get a tan, well for some reason my sodium and potassium levels drop dangerously, I must take electrolytes and potassium tablets, and I have a tan which especially gets darker when low on cortisol or pre crisis. This has been a puzzle for my doctors. I wonder if anyone else is like me?
Answer: The hyperpigmentation seen in primary adrenal insufficiency is due to the overproduction of melanocyte stimulating hormone in association with the overproduction of ACTH in the pituitary. The MSH stimulates the melanocytes in the skin, causing a darkening. It is not really a tan, which would be pronounced in sun exposed areas. The hyperpigmentation of PAI is all over, including areas not exposed to the sun, and includes the gums in the mouth. If a person with SAI gets a tan, it is due to something else, perhaps other medications that can cause photosensitivity. There are many medications that do that. The tendency to have both low sodium and potassium suggests water overload, medication side effects, or hypothyroidism.
Question: I've had Addison's disease for 25 years. Four weeks ago I got Covid. I am fully vaccinated and had two boosters. I just thought I had a cold. I've been negative for about 3 weeks but still have constant sinus drainage in the back of my throat. I spoke with my primary care physician today to see if he could prescribe something for me. He said my Addison's is complicating things. He normally would order prednisone but can't since I have Addison's. Why can't I take prednisone?
Answer: I would expect that the endocrinologist would prescribe Paxlovid within the first 5 days of symptoms. This would have diminished the probability of post Covid symptoms. If Paxlovid was not prescribed, the persistent throat symptoms are quite common. Prednisone would not be useful here, but other simple treatments for the symptoms, like Mucinex would be appropriate. Either way, the symptoms will eventually subside.
Question: I am curious about a kidney transplant - does the adrenal gland go along with the kidney transplant?
Answer: The adrenal gland has separate circulation from the kidney. The donor kidney does not include the adrenal gland. The recipient has both original adrenals.
Question: Can adrenal insufficiency cause diabetes?
Answer: Adrenal insufficiency does not cause diabetes. There are two basic types of diabetes: type 1 is an autoimmune disease where antibodies injure the cells in the pancreas that make insulin. This is similar to the mechanism that causes Addison's disease. There is an increased incidence of this type of diabetes in people who have Addison's, just as there is an increased incidence of autoimmune thyroid disease. Type 2 diabetes is due to insulin resistance and is associated with overweight and age. Since it is very common, many people with adrenal insufficiency will develop type 2 diabetes in their lifetime. Taking excessive doses of glucocorticoids may increase the risk of type 2 diabetes.
Question: I have recently been diagnosed with Secondary Isolated ACTH Deficiency. My pituitary MRI showed it was normal but not signaling to the adrenals. My adrenals are shriveled up. I have diabetes type 2 and hypothyroidism, both of which are controlled. I am on 20mg of hydrocortisone a day but am still so fatigued that I fall asleep several times a day. I feel weak and shaky much of the time. I am regularly dehydrated so I've found liquid IV helps, but I have hypertension so too much salt isn't good for me. My doctor keeps telling me the symptoms I have (including getting bruised easily) don't come from the Al. What am I missing? Is there a good guide for my version of AI?
Answer: The fatigue can be from a combination of the other medical issues, including the diabetes and hypothyroidism. It may also be caused by the steroid replacement using hydrocortisone 20 mg. If that is taken in the morning, adding a small dose in the afternoon may help. Some people with secondary adrenal insufficiency feel better using a longer acting glucocorticoid: prednisone, usually starting at 5 mg and adjusting from there. Another advantage to prednisone over hydrocortisone is that it contains less mineralocorticoid activity, so blood pressure will be less affected. All of this must be discussed with the endocrinologist.
Question: My doctor is prescribing Paxlovid for COVID. When I check it out online, I read that it alters the absorption of Cortef and Fludrocortisone. My doctor does not understand Addison’s, so he may not be aware of how crucial that absorption is. What is NADF advising regarding Paxlovid with Cortef and Fludrocortisone? I just read NADF article “FDA Approves Antiviral Pills……” along with its links. It does not address this issue.
Answer: Paxlovid is appropriate for individuals with adrenal insufficiency who have Covid. It has a minor effect on glucocorticoid metabolism, especially dexamethasone and prednisone, but not hydrocortisone or fludrocortisone. Even then, the effect is to raise the level, which is beneficial in the setting of symptomatic Covid. Individuals with adrenal insufficiency should increase their dosage of glucocorticoids to handle the stress of the acute illness. Any effect during the 5-day course of Paxlovid is helpful, not harmful. Since there are many other drugs that can interact with Paxlovid, they should be reviewed by the physician and pharmacist.
Question: My daily medications are Hydrocortisone 10 mg in the am, 5 mg in in the afternoon and Fludrocortisone 0.05mg daily. Based on my June 2022 labs, my PCP stated that I have iron deficiency anemia. MCV=84.2, MCH=26.9 (Low), MCHC=31.9 (L), RDW=14.2, Iron=31 (L), TIBC=447,
% Iron Saturation=7%, Ferritin=6. What lab values/results determine macrocytic anemia, pernicious anemia, vitamin B12 absorption deficiency or iron deficiency anemia? My PCP prescribed oral Ferrous Sulfate 325mg and Vitamin C 200mg every other day. Dr. Margulies what are your recommendations for treatment?
Answer: These lab values do indicate iron deficiency anemia. The key values are the low MCV (microcytic), low iron and low ferritin. Absent are the values for hgb and hct. Assuming these values are low, replacement iron is appropriate. Before starting therapy, one must establish the cause of the iron deficiency anemia. Is there bleeding? Where is it coming from? Be careful not to miss a significant cause, like a colon cancer or bleeding ulcer. Pernicious anemia would be ruled out by the absence of macrocytic values (high MCV) and a normal B12. A blood test for anti-parietal cell antibodies is useful to confirm PA when the B12 level is low.
Answer: Fludrocortisone is a replacement for aldosterone, the adrenal hormone that signals the kidneys to retain sodium and thereby increase blood volume and blood pressure. While retaining sodium, it causes the excretion of potassium into the urine. In assessing the proper dosage of fludrocortisone in people with primary adrenal insufficiency, we look at the following: blood pressure - is there a postural drop on standing, is the BP too high; is the serum potassium normal or too high; is there ankle swelling from retention of too much sodium; and we have the very useful blood test for plasma renin. Renin is made in the kidneys, reflecting blood volume. If the volume is too low, renin is elevated. If the volume is too high, renin is suppressed. Once an adjustment in fludrocortisone dosage is made, all these parameters should be assessed again at the next visit.
Question: I have Addison’s and Type 1 diabetes, in addition to Hashimoto’s. I have always had an emergency kit to inject dexamethasone in case of a crisis. Now I have glucagon for an emergency injection for low blood sugar. I asked my endo - if I am found unconscious with no other clue - give dexamethasone injection, then check if low blood sugar, give glucagon? My endo said just give the glucagon, and let the ER provide the steroids when I get to the hospital. But my recent crisis was a good example of what many of us know - if we don’t know to give ourselves the emergency injection, we may not get it at all. I did not get admitted to ER in North Carolina for many hours and was too out of it to give myself the injection. That did not go well. Any advice welcome.
Answer: With the combination of Addison's disease, Hashimoto's thyroiditis and type 1 diabetes, the most likely cause of loss of consciousness would be hypoglycemia. Therefore, if found unconscious, I would recommend that someone give sc glucagon immediately. An adrenal crisis generally takes hours to develop, with significant symptoms, including nausea, vomiting, diarrhea, muscle cramps and fatigue. IM or SC steroids (usually hydrocortisone rather than dexamethasone) can be self administered or given by someone else if vomiting prevents the retention of the oral steroids. I basically agree with your endocrinologist. The issue of getting appropriate emergency management of your adrenal crisis is another matter. NADF strongly recommends wearing a MedicAlert bracelet or necklace indicating adrenal insufficiency, carrying a NADF wallet card giving instructions, and most importantly, loudly insisting to the ER medical staff that you have adrenal insufficiency and are in an adrenal crisis.
Question: I'd be curious to know how many people with AI caused by an autoimmune disease also have other autoimmune diseases . . . particularly thyroid diseases? From my own clinical experience, at least 50% will develop autoimmune thyroid disease.
Answer: From my own clinical experience, at least 50% will develop autoimmune thyroid disease.
Question: What could be advice for someone who has experienced many adrenal crisis incidents over just the past 3 years (I've had it for 6 years this month.) I've been on hydrocortisone, prednisone, and am currently on a high dose of dexamethasone and have been on that high dose for two years. even with that, stress dosing when needed and doing other preventative measures my cortisol still hits the floor (.4 on average) to put me in the hospital.
Answer: It is difficult to determine what factors make you more prone to acute adrenal crises. Many factors could be involved, including occupation, family status that might expose you to more infections, other coexisting diseases, and the need for early recognition of the signs and symptoms that indicate that stress doses should be started immediately. I would recommend that you have an emergency Solu-Cortef vial and syringe, which might prevent the need for an ER visit in some situations. I am a bit puzzled about the switch to prednisone or high dose dexamethasone. If you have primary adrenal insufficiency, prednisone and dex have no mineralocorticoid activity. I assume you are taking adequate fludrocortisone. If not, your blood volume may be chronically low, keeping you too close to the threshold where blood pressure can drop and precipitate a crisis. Also, since you mention very low serum cortisol levels, keep in mind that when you are taking dexamethasone, the serum cortisol will be suppressed, so it will not be a useful test. Much better to go back to hydrocortisone.
Question: With regards to the Solu-Cortef injection, if vomiting is occurring, would that be sufficient to try to stay at home or would an ER visit be necessary due to possible dehydration?
Answer: If a person with Addison's disease is vomiting and can't hold down oral hydrocortisone, the Solu-Cortef injection may be sufficient if the vomiting stops and you can start to keep oral fluids and then hydrocortisone down. However, if the vomiting persists, or there are signs of low blood pressure or fever, a trip to the ER may still be necessary. Either way, the injection provides some immediate relief and reduces the overall risk of the acute adrenal crisis.
Question: Does anything (i.e., meds, etc.) impact plasma renin test? My results (normal or low) do not seem to match up with symptoms and doctors have not been much in favor of me taking fludrocortisone. I am currently taking 0.05mg daily.
Answer: Diuretics will increase renin, which is why they are inappropriate in Addison's disease, since they reduce blood volume. If your renin is normal to low, blood volume on your current dose of fludrocortisone is adequate. The dose of 0.05 mg is a common dose, along with appropriate hydrocortisone, which also has mineralocorticoid activity. If your blood pressure is high, the low renin suggests that you may be able to reduce the dose of fludrocortisone.
Question: I read recently that green tea is bad for Addison's Disease. Is this statement true; and, if so, why?
Answer: I have never seen any statement like that. To my knowledge, green tea is safe in normal quantities. It does have some caffeine, but less than coffee, which is also safe. Very large amounts of green tea might cause some liver inflammation, but that is not a specific issue with Addison's disease. Enjoy your green tea!
Question: I was diagnosed with Addison's Disease in 2004 and Hypothyroidism in the early 90s and my medication is stable for both diseases. I have been on a daily dose of 10 mg DHEA since 2005. I started experiencing hair loss last fall and have since been diagnosed with female pattern hair loss. I stopped the DHEA 10 mg a few months ago. I'd like to try to take Spironolactone for the hair loss as my dermatologist recommended this, but know this medication affects potassium. Is it safe for a woman with Addison's disease to take Spironolactone for hair loss?
Answer: Spironolactone is not a good idea in Addison's disease. It is a mild diuretic and does elevate potassium. Your doctor should check to see if your serum testosterone is high normal or elevated. If it is, a better medication than spironolactone would be finasteride. It blocks the metabolism of testosterone but does not elevate potassium. As a woman, the dose is a fraction of the dose for men with enlarged prostate. I usually use 2.5 mg every other day. Also, add biotin, a safe vitamin that is good for hair and nails.
Question: I have SAI and was diagnosed in 2009. My ACTH was very low. Although it is said that with SAI your sodium levels don't drop and you don't get a tan, well for some reason my sodium and potassium levels drop dangerously, I must take electrolytes and potassium tablets, and I have a tan which especially gets darker when low on cortisol or pre crisis. This has been a puzzle for my doctors. I wonder if anyone else is like me?
Answer: The hyperpigmentation seen in primary adrenal insufficiency is due to the overproduction of melanocyte stimulating hormone in association with the overproduction of ACTH in the pituitary. The MSH stimulates the melanocytes in the skin, causing a darkening. It is not really a tan, which would be pronounced in sun exposed areas. The hyperpigmentation of PAI is all over, including areas not exposed to the sun, and includes the gums in the mouth. If a person with SAI gets a tan, it is due to something else, perhaps other medications that can cause photosensitivity. There are many medications that do that. The tendency to have both low sodium and potassium suggests water overload, medication side effects, or hypothyroidism.
Question: I've had Addison's disease for 25 years. Four weeks ago I got Covid. I am fully vaccinated and had two boosters. I just thought I had a cold. I've been negative for about 3 weeks but still have constant sinus drainage in the back of my throat. I spoke with my primary care physician today to see if he could prescribe something for me. He said my Addison's is complicating things. He normally would order prednisone but can't since I have Addison's. Why can't I take prednisone?
Answer: I would expect that the endocrinologist would prescribe Paxlovid within the first 5 days of symptoms. This would have diminished the probability of post Covid symptoms. If Paxlovid was not prescribed, the persistent throat symptoms are quite common. Prednisone would not be useful here, but other simple treatments for the symptoms, like Mucinex would be appropriate. Either way, the symptoms will eventually subside.
Question: I am curious about a kidney transplant - does the adrenal gland go along with the kidney transplant?
Answer: The adrenal gland has separate circulation from the kidney. The donor kidney does not include the adrenal gland. The recipient has both original adrenals.
Question: Can adrenal insufficiency cause diabetes?
Answer: Adrenal insufficiency does not cause diabetes. There are two basic types of diabetes: type 1 is an autoimmune disease where antibodies injure the cells in the pancreas that make insulin. This is similar to the mechanism that causes Addison's disease. There is an increased incidence of this type of diabetes in people who have Addison's, just as there is an increased incidence of autoimmune thyroid disease. Type 2 diabetes is due to insulin resistance and is associated with overweight and age. Since it is very common, many people with adrenal insufficiency will develop type 2 diabetes in their lifetime. Taking excessive doses of glucocorticoids may increase the risk of type 2 diabetes.
Question: I have recently been diagnosed with Secondary Isolated ACTH Deficiency. My pituitary MRI showed it was normal but not signaling to the adrenals. My adrenals are shriveled up. I have diabetes type 2 and hypothyroidism, both of which are controlled. I am on 20mg of hydrocortisone a day but am still so fatigued that I fall asleep several times a day. I feel weak and shaky much of the time. I am regularly dehydrated so I've found liquid IV helps, but I have hypertension so too much salt isn't good for me. My doctor keeps telling me the symptoms I have (including getting bruised easily) don't come from the Al. What am I missing? Is there a good guide for my version of AI?
Answer: The fatigue can be from a combination of the other medical issues, including the diabetes and hypothyroidism. It may also be caused by the steroid replacement using hydrocortisone 20 mg. If that is taken in the morning, adding a small dose in the afternoon may help. Some people with secondary adrenal insufficiency feel better using a longer acting glucocorticoid: prednisone, usually starting at 5 mg and adjusting from there. Another advantage to prednisone over hydrocortisone is that it contains less mineralocorticoid activity, so blood pressure will be less affected. All of this must be discussed with the endocrinologist.
Question: My doctor is prescribing Paxlovid for COVID. When I check it out online, I read that it alters the absorption of Cortef and Fludrocortisone. My doctor does not understand Addison’s, so he may not be aware of how crucial that absorption is. What is NADF advising regarding Paxlovid with Cortef and Fludrocortisone? I just read NADF article “FDA Approves Antiviral Pills……” along with its links. It does not address this issue.
Answer: Paxlovid is appropriate for individuals with adrenal insufficiency who have Covid. It has a minor effect on glucocorticoid metabolism, especially dexamethasone and prednisone, but not hydrocortisone or fludrocortisone. Even then, the effect is to raise the level, which is beneficial in the setting of symptomatic Covid. Individuals with adrenal insufficiency should increase their dosage of glucocorticoids to handle the stress of the acute illness. Any effect during the 5-day course of Paxlovid is helpful, not harmful. Since there are many other drugs that can interact with Paxlovid, they should be reviewed by the physician and pharmacist.
Question: My daily medications are Hydrocortisone 10 mg in the am, 5 mg in in the afternoon and Fludrocortisone 0.05mg daily. Based on my June 2022 labs, my PCP stated that I have iron deficiency anemia. MCV=84.2, MCH=26.9 (Low), MCHC=31.9 (L), RDW=14.2, Iron=31 (L), TIBC=447,
% Iron Saturation=7%, Ferritin=6. What lab values/results determine macrocytic anemia, pernicious anemia, vitamin B12 absorption deficiency or iron deficiency anemia? My PCP prescribed oral Ferrous Sulfate 325mg and Vitamin C 200mg every other day. Dr. Margulies what are your recommendations for treatment?
Answer: These lab values do indicate iron deficiency anemia. The key values are the low MCV (microcytic), low iron and low ferritin. Absent are the values for hgb and hct. Assuming these values are low, replacement iron is appropriate. Before starting therapy, one must establish the cause of the iron deficiency anemia. Is there bleeding? Where is it coming from? Be careful not to miss a significant cause, like a colon cancer or bleeding ulcer. Pernicious anemia would be ruled out by the absence of macrocytic values (high MCV) and a normal B12. A blood test for anti-parietal cell antibodies is useful to confirm PA when the B12 level is low.
Q&A from June 2022
Question: I had both adrenal glands surgically removed in September 2020 and now have adrenal insufficiency, which is treated with hydrocortisone and fludrocortisone. In October 2021, I learned that I had sudden onset cirrhosis of the liver, which no one can seem to explain. I’ve never used illegal drugs, have no history of hepatitis, and drink very rarely (1-2 drinks a few times a year before my diagnosis. I don’t drink at all now). Could the steroids possibly have anything to do with it?
Answer: Replacement steroids used to manage adrenal insufficiency do not cause any type of liver disease. The most common cause of cirrhosis is not alcohol. The most common causes are fatty liver and non-alcoholic steatohepatitis or NASH. Your doctor will need to do a thorough evaluation, including ruling out old infection from viral hepatitis. Imaging of the liver may include a new technique that measures the amount of fibrosis. A liver biopsy may be needed. Management should be with a gastroenterologist who sees a lot of liver disease.
Question: I’m supposed to have an aggressive preparation for an upcoming colonoscopy and endoscopy. Is it safe to alter potassium and electrolytes for someone with Primary Adrenal Insufficiency (PAD?)
Answer: The prep itself is safe for adrenal insufficiency. I recommend plenty of clear fruit juices like apple or white grape juice rather that Gatorade. The procedure itself is not stressful, but the anesthetist or anesthesiologist must know about the adrenal insufficiency and be prepared to give iv hydrocortisone only if the procedure goes much longer than expected or if there is a complication.
Question: I was diagnosed with CREST syndrome (2 positive ANA years apart plus other tests) and was being treated about 5 years before I was diagnosed with Addison’s and put on daily steroids. My ANA became negative, and I was taken off treatment. I’m still symptomatic but I can’t get a rheumatologist to see me. Could my daily steroids for Addison’s be affecting my ANA tests?
Answer: CREST is a complex rheumatology disorder that affects multiple organs. The ANA test is mostly used to diagnose and monitor systemic lupus, which is not part of CREST. However, the ANA is often abnormal in other disorders and is commonly seen in healthy women. The negative ANA at this time would not be the result of the use of maintenance dose glucocorticoids for the Addison’s disease. Having a previous diagnosis of CREST, it is very important to see a rheumatologist now to sort out if you really have it and to provide guidance on managing the residual symptoms.
Question: Has there ever been a case study or case of a primary adrenal insufficiency patient not being accurately diagnosed with cancer, specifically, colon, because of steroid dependency and the absence of weight loss?
Answer: I am not aware of any actual study or case of this sort. Cancer screening can be difficult with coexisting medical conditions in general. Certainly, in the case of colon cancer, weight loss should not be considered as an accurate sign. Screening with colonoscopy to find early cancer should be performed regularly. The objective is to find suspicious lesions before they cause any signs or symptoms.
Question: I’ve had secondary AI for 10 years and feel confident in my ability to manage it on a daily basis but having watched my husband prep for his first colonoscopy recently, I feel some trepidation. After all, isn’t diarrhea one of the primary triggers of adrenal crisis? Colonoscopy preparation results in extreme diarrhea for several hours! I’d appreciate any guidance you can offer on what I need to discuss with my endocrinologist and my surgeon, and how I can limit the risk to my health during the preparation.
Answer: Despite the concern about the diarrhea, colonoscopy is not a cause for concern in people with primary or secondary adrenal insufficiency. During the prep day when medications are given to help with the clean out and clear liquids are necessary, if appropriate fluids are consumed there will be no need for extra doses of hydrocortisone. I do recommend using clear fruit juices like apple juice and white grape juice because they add needed calories. The procedure itself is also not stressful. Light anesthesia is used, not general anesthesia. Pre-surgical stress dosing of hydrocortisone is not needed. I would simply consider an extra dose of 10 mg orally before going to the procedure only if you feel very anxious. It is important to inform the physician doing the colonoscopy and the anesthesiologist about the adrenal insufficiency, so they are prepared to give IV hydrocortisone if the procedure is prolonged or there are any complications.
Answer: Replacement steroids used to manage adrenal insufficiency do not cause any type of liver disease. The most common cause of cirrhosis is not alcohol. The most common causes are fatty liver and non-alcoholic steatohepatitis or NASH. Your doctor will need to do a thorough evaluation, including ruling out old infection from viral hepatitis. Imaging of the liver may include a new technique that measures the amount of fibrosis. A liver biopsy may be needed. Management should be with a gastroenterologist who sees a lot of liver disease.
Question: I’m supposed to have an aggressive preparation for an upcoming colonoscopy and endoscopy. Is it safe to alter potassium and electrolytes for someone with Primary Adrenal Insufficiency (PAD?)
Answer: The prep itself is safe for adrenal insufficiency. I recommend plenty of clear fruit juices like apple or white grape juice rather that Gatorade. The procedure itself is not stressful, but the anesthetist or anesthesiologist must know about the adrenal insufficiency and be prepared to give iv hydrocortisone only if the procedure goes much longer than expected or if there is a complication.
Question: I was diagnosed with CREST syndrome (2 positive ANA years apart plus other tests) and was being treated about 5 years before I was diagnosed with Addison’s and put on daily steroids. My ANA became negative, and I was taken off treatment. I’m still symptomatic but I can’t get a rheumatologist to see me. Could my daily steroids for Addison’s be affecting my ANA tests?
Answer: CREST is a complex rheumatology disorder that affects multiple organs. The ANA test is mostly used to diagnose and monitor systemic lupus, which is not part of CREST. However, the ANA is often abnormal in other disorders and is commonly seen in healthy women. The negative ANA at this time would not be the result of the use of maintenance dose glucocorticoids for the Addison’s disease. Having a previous diagnosis of CREST, it is very important to see a rheumatologist now to sort out if you really have it and to provide guidance on managing the residual symptoms.
Question: Has there ever been a case study or case of a primary adrenal insufficiency patient not being accurately diagnosed with cancer, specifically, colon, because of steroid dependency and the absence of weight loss?
Answer: I am not aware of any actual study or case of this sort. Cancer screening can be difficult with coexisting medical conditions in general. Certainly, in the case of colon cancer, weight loss should not be considered as an accurate sign. Screening with colonoscopy to find early cancer should be performed regularly. The objective is to find suspicious lesions before they cause any signs or symptoms.
Question: I’ve had secondary AI for 10 years and feel confident in my ability to manage it on a daily basis but having watched my husband prep for his first colonoscopy recently, I feel some trepidation. After all, isn’t diarrhea one of the primary triggers of adrenal crisis? Colonoscopy preparation results in extreme diarrhea for several hours! I’d appreciate any guidance you can offer on what I need to discuss with my endocrinologist and my surgeon, and how I can limit the risk to my health during the preparation.
Answer: Despite the concern about the diarrhea, colonoscopy is not a cause for concern in people with primary or secondary adrenal insufficiency. During the prep day when medications are given to help with the clean out and clear liquids are necessary, if appropriate fluids are consumed there will be no need for extra doses of hydrocortisone. I do recommend using clear fruit juices like apple juice and white grape juice because they add needed calories. The procedure itself is also not stressful. Light anesthesia is used, not general anesthesia. Pre-surgical stress dosing of hydrocortisone is not needed. I would simply consider an extra dose of 10 mg orally before going to the procedure only if you feel very anxious. It is important to inform the physician doing the colonoscopy and the anesthesiologist about the adrenal insufficiency, so they are prepared to give IV hydrocortisone if the procedure is prolonged or there are any complications.
Q&A from March 2022
Question: How does the endocrinologist know how much fludrocortisone to start an Addison’s patient on when diagnosed? What tests and/or symptoms does the doctor and patient monitor over time to determine if different dosing needed? Is there any time that a patient would need to take more fludrocortisone for a singular event (e.g., sweating more)?
Answer: Fludrocortisone is the medication that replaces the hormone aldosterone, the mineralocorticoid hormone. This hormone tells the kidneys to absorb sodium and excrete potassium. This helps to maintain blood volume and blood pressure. In untreated Addison’s disease, the body loses sodium and retains potassium, so blood pressure tends to be low, contributing to lightheadedness and fainting. In prescribing fludrocortisone, the endocrinologist will often start with an average dose of 0.1 mg per day and then adjust from there. Adjustments are based on clinical response, including blood pressure, drop in blood pressure on standing, symptoms like lightheadedness, and laboratory tests like serum potassium, sodium and BUN. One of the most useful tests of adequacy of fludrocortisone dosing is the plasma renin. This measures the kidney response to blood volume. If it is high, more fludrocortisone is needed. If it is low, and blood pressure is elevated, it would be appropriate to lower the dose. Keep in mind that there is also some mineralocorticoid activity in the hydrocortisone. Fludrocortisone has a long duration of action in the body, so sometimes low doses like 1/2 tablet every 2 or 3 days can be used. With that long duration and slow metabolism, it is not useful to add more for acute events or illnesses. It is better to add more hydrocortisone, salt and fluids for acute events that may include sweating and fluid loss.
Question: Can Addison’s disease cause neuropathy? Like in your hands and feet?
Answer: Addison’s disease does not cause neuropathy. However, there are two rare diseases of the nervous system that are associated with Addison’s disease. They are caused by an inherited enzyme disorder that causes injury to the nerves in the brain and spinal cord. When it presents in infancy, it is called adrenoleukodystrophy. If it occurs in an adult, it is milder and is called adrenomyeloneuropathy.
Question: Does DHEA affect salt balance? I’ve experienced cramping feet since starting. Is hair loss an effect of taking DHEA?
Answer: DHEA is a mild androgen (male hormone) made in the adrenal glands. It is low in Addison’s disease along with cortisol and aldosterone. Replacement with low doses of DHEA, usually 25 mg for women, 50 mg for men has been found to improve sense of well-being. This is a vague benefit and is hard to study. I usually suggest a trial of it after the doses of hydrocortisone and fludrocortisone are stabilized. Some people feel a benefit, some don’t. Since it is not a medical necessity, I give my patients the option. DHEA does not have any significant mineralocorticoid activity, so it should not cause fluid retention or cramping. Since it is a mild androgen, it can contribute to hair loss, acne and facial hair growth. That is why a lower dose is used for women. However, if any of these dermatologic side effects occur even with a low dose, I advise that it be stopped.
Question: Should individuals with Adrenal Insufficiency take potassium? I was always told not to.
Answer: Primary adrenal insufficiency causes an elevation in serum potassium due to the deficiency of aldosterone. Since this hormone is not deficient in secondary adrenal insufficiency, potassium levels are usually normal in that condition. People with PAI or Addison’s disease should not take potassium supplements since it would add to the tendency for high levels from stress or inadequate hydrocortisone or fludrocortisone dosage. Generally, when replacement doses are adequate and stress levels are normal, there is no need to eliminate high potassium foods, but it is not advisable to purposely add high potassium foods.
Question: It appears to me that my daughter stays sicker longer with colds and that kind of thing. Is it true that Addison’s patients’ take longer to recover from common colds and the like?
Answer: We know from recent studies that people with Addison’s disease have an increased susceptibility to viral infections because of the effect of maintenance glucocorticoids on the immune mechanism that fights viral infections. However, there is no literature on the duration of viral symptoms. I suspect this is an individual phenomenon. From talking to my patients who do not have adrenal disease, I find a lot of variability in their response to viral infections. Remember that those with Addison’s should add extra hydrocortisone when they do have an infection and maintain the extra dose until they feel better. This can reduce the severity of symptoms.
Question: Can I fast with Addison’s disease?
Answer: Yes, if the hydrocortisone and fludrocortisone doses are taken on time, a short fast of a few hours would be harmless. Prolonged fasts or greater than one day might cause hypoglycemia, which would be risky.
Question: I was taking too much Florinef (.2 mg), and now my blood pressure is too high. I’ve reduced it by one fourth. How long before I can expect my BP to come down?
Answer: Fludrocortisone has a very long duration of action. Changes in the dosage take days to a few weeks to reach a new stable effect. Lowering the dose to reduce blood pressure may take 2 to 4 weeks to stabilize.
Question: Is it safe to take elderberry and hydrocortisone? Not necessarily at the same time but, in the same day. Is it safe to take elderberry daily while being steroid dependent?
Answer: I have no experience with any of my patients taking elderberry. It has been promoted for its immune support, but there is not much scientific evidence of a real benefit. It is probably safe for most people, but I am concerned about one of its properties - it is a mild diuretic. That may make it questionable for people with primary adrenal insufficiency since it may reduce sodium and blood pressure. If an individual does try it, monitor for side effects, including dizziness and nausea. If any side effects occur, stop it.
Question: I was diagnosed with autoimmune primary adrenal insufficiency in March 2021. I’m quite stable on a replacement dose of hydrocortisone and fludrocortisone, despite occasional episodes of nausea, dizziness and fatigue. How often is it recommended for someone with Addison’s to see an endocrinologist for follow-up? And what additional testing is recommended at follow-up? Specifically, I’m interested to hear about recommendations for follow-up testing of cortisol, aldosterone, ACTH, adrenal antibodies, curve test, etc., and whether this is useful. I’ve been told that now that I have a diagnosis, no additional testing is necessary other than checking my electrolytes levels. I guess I was just thinking this might be helpful to see if there was any improvement in cortisol production once on a replacement dose.
Answer: Once a diagnosis of autoimmune adrenal insufficiency is made and replacement hydrocortisone and fludrocortisone is prescribed, I recommend frequent follow up every 2 to 3 months until you are comfortable that the dosages of both medications are optimal. It is important to have face to face meetings with the endocrinologist. The doctor should look for signs of persistent adrenal insufficiency as well as overtreatment - on the physical examination as well as detailed questioning about symptoms, including fatigue, dizziness, nausea, and salt craving. Blood studies should include electrolytes, but also plasma renin to help establish the appropriate dose of fludrocortisone. The dose of hydrocortisone should be the lowest dose that prevents signs and symptoms of adrenal insufficiency. Once there is stability, I suggest face to face meetings every 6 months. There should be a physical exam and discussion of adrenal symptoms and intercurrent other medical history. There should be a discussion of management of any acute medical events and whether appropriate steroids were given. There is no benefit to repeating blood tests for cortisol, ACTH, aldosterone or adrenal antibodies. Since I suggest using the lowest replacement dose of hydrocortisone that prevents signs and symptoms, if there really is some recovery of adrenal reserve (seen in a minority of patients), it will be apparent by allowing a low dose of glucocorticoid. I do not suggest a routine repeat of the entire diagnostic work-up because it has a very low yield of useful information. I do recommend routine re-testing for other autoimmune endocrine conditions, especially thyroid disease and vitamin B12 deficiency. Make sure your endocrinologist is advised about any new medical diagnosis and treatment from other doctors. Make sure you are familiar with appropriate emergency measures for acute illness and injuries.
Answer: Fludrocortisone is the medication that replaces the hormone aldosterone, the mineralocorticoid hormone. This hormone tells the kidneys to absorb sodium and excrete potassium. This helps to maintain blood volume and blood pressure. In untreated Addison’s disease, the body loses sodium and retains potassium, so blood pressure tends to be low, contributing to lightheadedness and fainting. In prescribing fludrocortisone, the endocrinologist will often start with an average dose of 0.1 mg per day and then adjust from there. Adjustments are based on clinical response, including blood pressure, drop in blood pressure on standing, symptoms like lightheadedness, and laboratory tests like serum potassium, sodium and BUN. One of the most useful tests of adequacy of fludrocortisone dosing is the plasma renin. This measures the kidney response to blood volume. If it is high, more fludrocortisone is needed. If it is low, and blood pressure is elevated, it would be appropriate to lower the dose. Keep in mind that there is also some mineralocorticoid activity in the hydrocortisone. Fludrocortisone has a long duration of action in the body, so sometimes low doses like 1/2 tablet every 2 or 3 days can be used. With that long duration and slow metabolism, it is not useful to add more for acute events or illnesses. It is better to add more hydrocortisone, salt and fluids for acute events that may include sweating and fluid loss.
Question: Can Addison’s disease cause neuropathy? Like in your hands and feet?
Answer: Addison’s disease does not cause neuropathy. However, there are two rare diseases of the nervous system that are associated with Addison’s disease. They are caused by an inherited enzyme disorder that causes injury to the nerves in the brain and spinal cord. When it presents in infancy, it is called adrenoleukodystrophy. If it occurs in an adult, it is milder and is called adrenomyeloneuropathy.
Question: Does DHEA affect salt balance? I’ve experienced cramping feet since starting. Is hair loss an effect of taking DHEA?
Answer: DHEA is a mild androgen (male hormone) made in the adrenal glands. It is low in Addison’s disease along with cortisol and aldosterone. Replacement with low doses of DHEA, usually 25 mg for women, 50 mg for men has been found to improve sense of well-being. This is a vague benefit and is hard to study. I usually suggest a trial of it after the doses of hydrocortisone and fludrocortisone are stabilized. Some people feel a benefit, some don’t. Since it is not a medical necessity, I give my patients the option. DHEA does not have any significant mineralocorticoid activity, so it should not cause fluid retention or cramping. Since it is a mild androgen, it can contribute to hair loss, acne and facial hair growth. That is why a lower dose is used for women. However, if any of these dermatologic side effects occur even with a low dose, I advise that it be stopped.
Question: Should individuals with Adrenal Insufficiency take potassium? I was always told not to.
Answer: Primary adrenal insufficiency causes an elevation in serum potassium due to the deficiency of aldosterone. Since this hormone is not deficient in secondary adrenal insufficiency, potassium levels are usually normal in that condition. People with PAI or Addison’s disease should not take potassium supplements since it would add to the tendency for high levels from stress or inadequate hydrocortisone or fludrocortisone dosage. Generally, when replacement doses are adequate and stress levels are normal, there is no need to eliminate high potassium foods, but it is not advisable to purposely add high potassium foods.
Question: It appears to me that my daughter stays sicker longer with colds and that kind of thing. Is it true that Addison’s patients’ take longer to recover from common colds and the like?
Answer: We know from recent studies that people with Addison’s disease have an increased susceptibility to viral infections because of the effect of maintenance glucocorticoids on the immune mechanism that fights viral infections. However, there is no literature on the duration of viral symptoms. I suspect this is an individual phenomenon. From talking to my patients who do not have adrenal disease, I find a lot of variability in their response to viral infections. Remember that those with Addison’s should add extra hydrocortisone when they do have an infection and maintain the extra dose until they feel better. This can reduce the severity of symptoms.
Question: Can I fast with Addison’s disease?
Answer: Yes, if the hydrocortisone and fludrocortisone doses are taken on time, a short fast of a few hours would be harmless. Prolonged fasts or greater than one day might cause hypoglycemia, which would be risky.
Question: I was taking too much Florinef (.2 mg), and now my blood pressure is too high. I’ve reduced it by one fourth. How long before I can expect my BP to come down?
Answer: Fludrocortisone has a very long duration of action. Changes in the dosage take days to a few weeks to reach a new stable effect. Lowering the dose to reduce blood pressure may take 2 to 4 weeks to stabilize.
Question: Is it safe to take elderberry and hydrocortisone? Not necessarily at the same time but, in the same day. Is it safe to take elderberry daily while being steroid dependent?
Answer: I have no experience with any of my patients taking elderberry. It has been promoted for its immune support, but there is not much scientific evidence of a real benefit. It is probably safe for most people, but I am concerned about one of its properties - it is a mild diuretic. That may make it questionable for people with primary adrenal insufficiency since it may reduce sodium and blood pressure. If an individual does try it, monitor for side effects, including dizziness and nausea. If any side effects occur, stop it.
Question: I was diagnosed with autoimmune primary adrenal insufficiency in March 2021. I’m quite stable on a replacement dose of hydrocortisone and fludrocortisone, despite occasional episodes of nausea, dizziness and fatigue. How often is it recommended for someone with Addison’s to see an endocrinologist for follow-up? And what additional testing is recommended at follow-up? Specifically, I’m interested to hear about recommendations for follow-up testing of cortisol, aldosterone, ACTH, adrenal antibodies, curve test, etc., and whether this is useful. I’ve been told that now that I have a diagnosis, no additional testing is necessary other than checking my electrolytes levels. I guess I was just thinking this might be helpful to see if there was any improvement in cortisol production once on a replacement dose.
Answer: Once a diagnosis of autoimmune adrenal insufficiency is made and replacement hydrocortisone and fludrocortisone is prescribed, I recommend frequent follow up every 2 to 3 months until you are comfortable that the dosages of both medications are optimal. It is important to have face to face meetings with the endocrinologist. The doctor should look for signs of persistent adrenal insufficiency as well as overtreatment - on the physical examination as well as detailed questioning about symptoms, including fatigue, dizziness, nausea, and salt craving. Blood studies should include electrolytes, but also plasma renin to help establish the appropriate dose of fludrocortisone. The dose of hydrocortisone should be the lowest dose that prevents signs and symptoms of adrenal insufficiency. Once there is stability, I suggest face to face meetings every 6 months. There should be a physical exam and discussion of adrenal symptoms and intercurrent other medical history. There should be a discussion of management of any acute medical events and whether appropriate steroids were given. There is no benefit to repeating blood tests for cortisol, ACTH, aldosterone or adrenal antibodies. Since I suggest using the lowest replacement dose of hydrocortisone that prevents signs and symptoms, if there really is some recovery of adrenal reserve (seen in a minority of patients), it will be apparent by allowing a low dose of glucocorticoid. I do not suggest a routine repeat of the entire diagnostic work-up because it has a very low yield of useful information. I do recommend routine re-testing for other autoimmune endocrine conditions, especially thyroid disease and vitamin B12 deficiency. Make sure your endocrinologist is advised about any new medical diagnosis and treatment from other doctors. Make sure you are familiar with appropriate emergency measures for acute illness and injuries.
