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Found 60 matches in 48 Q&A's.


1) Q&A from the March, 2004 NADF newsletter:

QUESTION: I recently "met" another Addisonian via an Internet chatroom. This person does not take Florinef or fludrocortisone. Shouldn't all people with Addison's take Florinef?

ANSWER: Almost everyone with Addison's disease (primary adrenal insufficiency) should take some amount of Flofinef (fludrocortisone) because this replaces the mineralocorticoid aldosterone, which is lacking along with cortisol in primary disease. Flofinef causes sodium retnetion and potassium excretion in the kidneys and helps to maintain blood volume and blood pressure. There is a small amount of mineralocorticoid activity in hydrocortisone, but usually not enough. Therefore, when Addisonians try to replace with only hydrocortisone, they often are forced to take too much hydrocortisone in order to keep blood volume up, resulting in weight gain and other features of cortisone excess. The dose of Florinef can vary from as little as 1/2 tablet to as much as 3 or 4 tablets daily. People who have secondary adrenal insufficiency from pituitary disease or from long term steroid use usually do not need Florinef because they usually do not have an aldosterone deficiency. There are, however, some exceptions when Florinef is needed to maintain blood pressure and prevent potassium elevations.



2) Q&A from the September, 2005 NADF newsletter:

QUESTION: If I were to have a blood test for Adrenal Autoantibodies, exactly which autoantibodies would be tested? I have Premature Ovarian Failure, diagnosed in 1984, and primary Adrenal Insufficiency diagnosed in 1994. My endocrinologist told me at diagnosis that POF is a 'red flag' for future development of Addison's disease. Is the same autoantibody vs. steroid enzymes at work in both diseases?

ANSWER: The best antibody test for Addison's disease is the anti-21 hydroxylase test, available by commercial labs. Avoid the older "anti-adrenal antibody" test. I am not aware of any anti-ovary antibody test currently available.



3) Q&A from the September, 2005 NADF newsletter:

QUESTION: I have read that diagnosing adrenal fatigue can be very tricky and there are many types of different tests. Could you please share with me as to which one you think is the most accurate?

ANSWER: “Adrenal fatigue" is not a recognized medical diagnosis. Addison's disease is the correct term for primary adrenal insufficiency and is diagnosed with an abnormal lack of response to ACTH or Cortrosyn, elevated levels of ACTH, positive 21-OH antibodies (if autoimmune) and characteristic symptoms and physical findings. Clearly, people with Addison's disease must go through a period of relative loss of adrenal reserve before they present with the full set of abnormalities of total adrenal failure. During that phase there may be partial adrenal insufficiency that may give test results that are in between normal and classic Addison's. I would use the term early or partial adrenal insufficiency not “adrenal fatigue". I think that term is used by people who propose that the adrenals “wear out" from various stresses and miss the point that Addison's disease is not caused by stress, but by specific injury from antibodies, hemorrhage, infections, tumors, or surgery.



4) Q&A from the September, 2006 NADF newsletter:

QUESTION: I would be grateful if you could you tell me what type of an impact continued severe emotional stress can have on someone suffering from secondary adrenal deficiency caused through the presence of a pituitary tumor.

ANSWER: Emotional stress can cause significant symptoms of adrenal insufficiency in primary as well as secondary causes. Under normal pituitary-adrenal conditions, emotional stress would tend to promote an increase in ACTH and cortisol production. Since this does not happen in adrenal insufficiency disorders, the body feels like there is a lack of cortisol. Typical symptoms would be fatigue, lethargy, loss of appetite, weakness, dizziness and depression. Just as in cases of physical stress, one needs to remember to increase the dosage of glucocorticoid replacement. Laboratory tests are not very useful in this circumstance. If prolonged use of higher doses leads to signs of cortisol excess, then cut back to the lowest dose that keeps you feeling better. Also, try to deal with the cause of the emotional stress, if possible.



5) Q&A from the June, 2007 NADF newsletter:

QUESTION: I'm curious as to why you do not address PPNAD or Macro NAD on your website. These are both adrenal diseases that affect the population, they are just rarely diagnosed. I would like to see information, or at least their existence, acknowledged by your foundation.

ANSWER: primary pigmented nodular adrenal disease is a rare cause of Cushing's syndrome. Although not noted specifically, NADF's pamphlet on Cushing's does mention the rare occurrence of bilateral nodules as one of the causes of Cushing's syndrome. Pigmented nodular Cushing's is now acknowledged to be part of a genetic syndrome called Carney complex. This includes freckles on the face and lips, and Schwannomas (tumors made of nerve cells). It can also be associated with cardiac myxomas (tumors in the heart) and, rarely, excess growth hormone production. The usual treatment for the Cushing's is bilateral adrenalectomy, leading to surgical Addison's disease. The macro nodular adrenal disease as a cause of Cushing's syndrome is not associated with other disorders.



6) Q&A from the September, 2007 NADF newsletter:

QUESTION: Dear Dr. M, I was diagnosed with secondary pituitary adrenal insufficiency in 2000 after being treated with high doses of prednisone for sudden adult onset asthma. I went to Philadelphia this summer for a second opinion, as my endocrinologist is a very optimistic person and says he can get me off the steroids. He orders blood work every 6-8 weeks and gets a serum 8 a.m. cortisol level. Mine has been under 1 for most of the 9 years. The other endocrinologist ran the ACTH test. I take 7.5 mg of prednisone and he changed me to dexamethone for 5 days for the tests. The results came back as: Beginning cortisol level .4 - after an hour 3.9 - ACTH was < 2. He concluded...1. I had Addison's. 2. I will be steroid dependent for the rest of my life. Do you agree? I want to stop weaning. I have been down to 6 mg of Prednisone a day and 0.2 of Florinef and felt half decent. The second opinion said my adrenals are shot and weaning now is not an option. Thank you for your time.

ANSWER: You do appear to have secondary adrenal insufficiency. The term Addison's disease is reserved for primary adrenal insufficiency, so do not use that term. Since you are unable to taper off steroids over the past 7 years, and the ACTH stimulation test shows an inadequate reserve, I would agree that you should stop trying to taper. It is interesting that you are on Florinef. Most people with secondary adrenal insufficiency have adequate aldosterone production and need only prednisone. If your pattern included a high potassium level and/or low blood pressure, then you would need to stay on the Florinef.



7) Q&A from the March, 2010 NADF newsletter:

QUESTION: A lady’s 15 year old daughter was diagnosed with primary Addisons on 9/12/08, and is on 22 1/2 mg of hydrocortisone and 0.1 mg of fludrocortisone acetate daily. The daughter has a behavior problem and also a learning problem. The mother wonders if there is a correlation with learning problems and Addisons Disease, as every time the daughter is given a higher dosage of hydrocortisone, her learning, speech, and behavior problems seem to go away. She is able to read, write, etc. Once the meds are lowered, she returns back to her prior state. This medication amount would be around 30 mg of hydrocortisone. The endo the daughter sees just stated that the high dosage has too great of side effects for her.

ANSWER: The brain responds to cortisol deficiency as well as excess. Changes is mood, behavior and cognition are often seen in these extremes. There is no basic learning disability due to Addison’s disease. The goal of replacement therapy is to restore function and health as well as possible, with the physical signs and symptoms as the best indicator. There is a risk that overdosing of replacement hydrocortisone may occur if short term learning and behavior is used as the central focus of treatment. Also, it is important to assess thyroid function. If abnormal, this will often cause cognitive impairment.



8) Q&A from the December, 2011 NADF newsletter:

QUESTION: Our senior center in Attleboro, Ma is giving free shingle shots. My husband and I have both had the shingles. He had a serious case, and mine was mild. I am the one with primary Addison’s. (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.



9) Q&A from the September, 2012 NADF newsletter:

QUESTION: What is the most optimal form of cortisone and optimal dosing for a person who has cortisone induced Addison's, or is it called another name because it was drug-induced?

ANSWER: Steroid induced adrenal insufficiency is a form of secondary adrenal insufficiency and should not be called Addison's disease. That name refers to primary adrenal insufficiency due to destruction of the adrenals. The major difference is the need for replacement of both glucocorticoid and mineralocorticoid hormones in Addison's versus the need for only glucocorticoids in most people with secondary adrenal insufficiency.There is no perfect treatment dose. Each person needs individual monitoring. For secondary adrenal insufficiency, I would often start with prednisone 5 mg every morning and then adjust upward or downward as needed.



10) Q&A from the June, 2013 NADF newsletter:

QUESTION: I’ve been on prednisone non-stop for about 20 years for asthma. I was very slowly weaned to 7.5 mg every other day, a level I’ve been on for 3-5 years. Periodically I have to bump up the levels, and in the past 4 months I’ve had to bump them up and return to every day usage 3 times for asthma flares related to bronchial/lung infections. About 6 weeks ago I had a flare which required me to take the prednisone every day, in doses as high as 60 mg. It took about a month to get back to the 7.5 mg every other day. (I also have ulcerative colitis, but my primary medication for that is immuran.) Then I saw a new pulmonolgist. She asked me to reduce prednisone by 2.5 mg per week, becoming steroid free in a month. Her only warning about adrenal insufficiency regarded lightheadedness upon rising from a supine position. However, I wonder if that reduction is too fast, and if I should have blood tests to help guide the weaning. I am using 5 mg every other day now, but I have noticed weakness in my knees that I have associated with changes in steroid use in the past. I also have noticed new pain in my left hip, which I had not thought related, but now I wonder.

ANSWER: This is an example of the difficulty in tapering off long term steroids. I agree that the new pulmonary doctor may be too optimistic about your ability to taper and stop steroids after so many years of use and the frequent need to bump up to high doses. Going rapidly to every-other-day dosing in this situation is probably complicating the situation and contributing to the adrenal insufficiency symptoms (like the muscle weakness). Every other day dosing is useful in people who have been on steroids for a fairly short period of time, like a few weeks. In this current case, there is a great degree of adrenal suppression, so a slow taper of daily dosing has a greater chance of working. Once a dose of 5 mg is achieved, going down by 1/2 to 1 mg every 2 to 3 weeks may work better. Blood testing is not very useful, except for a morning ACTH once the dose is down to 2 or 3 mg, just to see if there is evidence of “awakening” of the pituitary. If ACTH is measurable, it is more probable that secondary adrenal insufficiency may resolve. Keep in mind that after 20 years of steroid use, many people have permanent secondary adrenal insufficiency and must settle on a baseline replacement dose of 4-5 mg of prednisone.



11) Q&A from the September, 2014 NADF newsletter:

QUESTION: I have Addison’s, and am currently trying to heal from wounds. But, I’ve been having trouble healing. The doctors say that my immune system and ability to heal are compromised by the steroids I need to live, no matter the amount. They are trying to lower my prednisone intake, to keep me above the level of crisis symptoms, but let my body heal better. Is this right?

ANSWER: This is an unfortunate clinical situation. I do maintain that the maintenance steroids used to treat people with primary adrenal insufficiency should not have a significant effect on the immune system or wound healing. However, once a person develops chronic infections and chronic wounds, they tend to be sick and often require higher doses of steroids for the acute illnesses that result from the infections. That can create a cycle of suppressed healing from the high doses for the illness. At this point, it is useless to blame the steroids, which are necessary. It is important to try to balance the wound healing therapy with enough steroids to prevent adrenal insufficiency signs and symptoms. It will not help to try to reduce the steroids to a point where adrenal symptoms occur.



12) Q&A from the June, 2015 NADF newsletter:

QUESTION: My sister, who is 76 years old and has been living with Addison's since she was 13, has recently been showing signs of dementia. According to Medline on the internet, metabolic dementia can be caused by Addison’s. Is this true and, if so, what can we do about it?

ANSWER: Although Addison's disease can contribute to dementia if undiagnosed or untreated, it would be an unlikely cause. If she has been well treated all these years, I would consider Alzheimer's disease as a likely primary cause. I suggest a neurologic consult to rule out other disorders, thyroid function tests to rule out hypothyroidism, and supervision of medication compliance to ensure proper steroid replacement.



13) Q&A from the June, 2016 NADF newsletter:

QUESTION: I have been working for the USPS for 12 years but 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.



14) Q&A from the June, 2017 NADF newsletter:

QUESTION: I was diagnosed with under active thyroid about 20 years ago and autoimmune Addison's disease 14 years ago. Per my primary care doctor my annual blood work showed that my A1c was 5.7 in January 2017 and my fasting blood sugars since run from 86-105. I retired in May of 2016 and yes my physical activity has reduced somewhat. What are my chances of developing Type1 diabetes? Do I have a chance to avoid this diagnosis? I have my annual checkup with my endocrinologist in May when we will repeat my A1c, but I am trying to be proactive. Also my husband has Type 1 diabetes, and our daughter was diagnosed with Type 1 diabetes about 22 years ago and under active thyroid 3 years ago, after pregnancy. What are her chances of being diagnosed with Addison’s disease?

ANSWER: The probability of developing one of the associated autoimmune endocrine disorders in a specific person is difficult to calculate. For you, as a person with a long history of autoimmune thyroid and adrenal disease, but no type 1 diabetes yet, I would expect that the risk is only modest for type 1 at this point in your life. However, keep in mind that type 2 diabetes, unrelated to the autoimmune issues you face, may occur and can be minimized by avoiding obesity and getting regular exercise. Your daughter does have an increased risk of developing Addison's disease, but it is certainly less than 50%. Since your husband has type 1 diabetes, she has autoimmune endocrine disease from both sides and may have inherited her disorders from either one of you. I suggest that you all continue to get appropriate screening for the disorders in question. For your daughter, it would be useful to check 21-OH adrenal antibodies. If that is positive, she is likely to develop clinical Addison’s disease.



15) Q&A from the December, 2017 NADF newsletter:

QUESTION: Since labs can measure antibodies to the adrenal cortex with the anti-21 hydroxylase test, is there any thought to make that the diagnosing test for primary adrenal insufficiency, and throw out the ACTH stimulation test?

ANSWER: No, the test for 21OH antibodies does not replace the ACTH stimulation test, but is a useful adjunct. If the antibodies are positive it simply means that the process of autoimmune adrenal insufficiency is taking place, so if there are signs and symptoms of adrenal insufficiency, it establishes the etiology. However, some people may not progress all the way, so positive antibodies does not prove that the adrenals are already destroyed. In addition, there are other causes of primary adrenal insufficiency besides autoimmune destruction, so ACTH stimulation testing is still the gold standard for proving significant adrenal insufficiency. Plus, it is useful in many cases of secondary adrenal insufficiency.



16) Q&A from the September, 2018 NADF newsletter:

QUESTION: I have serious concerns about the distinction between a primary, and secondary adrenal insufficient diagnosis. My daughter had negative results from an ACTH stimulation test, and the endocrinologist said she was both primary and secondary. I challenged him to the cause of primary and he could not answer it. We sent her to a clinic and they said she could get off steroids, and long story short, she is 10 years steroid free. I just don't understand how so many people are claiming to be primary with this type of testing. Isn’t there a clearer, more definite distinction in diagnosis of primary versus secondary adrenal insufficiency?

ANSWER: I totally agree that this is a problem. Many people with adrenal insufficiency are mislabeled. Ideally, primary adrenal insufficiency will be confirmed with an elevated morning ACTH, low serum cortisol and a lack of response to Cortrosyn. A positive anti 21-OH adrenal antibody test is very helpful in confirming autoimmune Addison's disease. Just having an abnormal response to Cortrosyn is not enough for the diagnosis.



17) Q&A from the December, 2018 NADF newsletter:

QUESTION: I have primary adrenal insufficiency. I’ve also been having issues with acidosis and bicarbonate drops quickly at times. I take potassium citrate. I was previously on sodium bicarbonate, but it didn’t seem effective. Maybe the potassium is part of the problem? I see a nephrologist who is focused on treating, but not diagnosing the problem.

ANSWER: The presence of acidosis suggests a primary renal disorder. Adding potassium is tricky because of the primary adrenal insufficiency. I would defer to the nephrologist who should have an understanding of the mechanism of the acidosis. If there is uncertainty about the cause, perhaps another nephrology opinion would be warranted.



18) Q&A from the June, 2020 NADF newsletter:

QUESTION: With the Covid-19 pandemic, what advice do you have for someone with primary hyperaldosteronism? I have to travel, and also have high blood nressure.

ANSWER: Although everyone needs to be careful today, I would not consider hyperaldosteronism as a high-risk disorder because neither the disease nor the treatment affects the immune system. Age and the degree of hypertension are the major considerations for compromises to your health.



19) Q&A from the June, 2020 NADF newsletter:

QUESTION: Can people feel “real scientifically-proven adrenal pain” with primary or secondary adrenal insufficiency?

ANSWER: The adrenal glands do not have a lot of nerve endings. The only situation where adrenal pain may occur is when there is an acute hemorrhage into one or both adrenal glands due to a clotting disorder or from anticoagulants. This is a known but rare cause of primary adrenal insufficiency. With autoimmune primary adrenal insufficiency, the adrenal glands shrink slowly due to the chronic inflammation of the adrenal tissue, and that is painless. With secondary adrenal insufficiency, the lack of ACTH stimulation leads to a very slow shrinkage of the adrenal glands, which is also painless.



20) Q&A from the September, 2020 NADF newsletter:

QUESTION: I am an adult who struggles with extremely low aldosterone. I am currently on Florinef but my levels are still at the lowest point on the range when blood work is done. I struggle with extreme fatigue, have paralysis sometimes (full body except for the head) and tremors/shaking once the paralysis lifts. I’ve dealt with this for years.

ANSWER: Aldosterone is the adrenal hormone that promotes salt retention and support of blood volume and blood pressure. When it is deficient, there is a tendency for low blood pressure, a further drop in blood pressure on standing (postural hypotension), and usually an elevated serum potassium. There are two major causes of low aldosterone: One is primary adrenal insufficiency (Addison’s disease), where the adrenals are destroyed and there is a loss of cortisol as well as aldosterone. The other is hyporeninemic hypoaldosteronism, caused by a kidney defect or disease where renin is deficient and cannot stimulate the adrenals to make aldosterone despite low blood volume. This defect is often seen in diabetes, but occurs in other kidney disorders as well. In this type, the adrenal glands are normal. The diagnosis is made by checking plasma renin and aldosterone at the same time. In Addison’s disease the renin is high, and the aldosterone is low. When both are low, it is hyporeninemic hypoaldosteronism. There are also some very rare cases of isolated aldosterone deficiency without cortisol deficiency. All types are treated with fludrocortisone because it is the only mineralocorticoid we have. The response is assessed by monitoring the blood pressure changes with posture, potassium and looking for excess replacement that can cause ankle swelling or an elevated blood pressure. Checking the level of aldosterone itself is useless because fludrocortisone is not measured in the assay. From your complaints about paralysis, I suspect that something else is going on besides hypoaldosteronism. A thorough neurologic evaluation is needed.



21) Q&A from the December, 2020 NADF newsletter:

QUESTION: I’m having serious issues with fluid retention. I need hydrocortisone due to a pituitary malfunction: good stim, low baselines. Sometimes random testing is normal on ACTH and cortisol, though. But I was told to take no less than 15 mgs hydrocortisone per day. I have Hashimoto’s as well with many symptoms: swollen, 15 lbs. overweight when I am unable to eat because of slowed digestion. I’m on thyroid meds, but those aren’t helping. When I take hydrocortisone, I retain even more fluid, without any benefit. Why would someone who needs the cortisol, get worse edema, on a dose that is physiological 15-20 mgs?

ANSWER: The question you ask is whether replacement doses of hydrocortisone can cause fluid retention. The answer is yes, if the dose is more than replacement for your specific needs. Many other factors can contribute to fluid retention, including the thyroid disease that you have, but also heart disease, kidney disease and vascular abnormalities. From your notes, it is not certain that you actually need hydrocortisone replacement. If you do, the baseline dose of 15 mg may be too much. Since pituitary disease is the primary problem, even if adrenal insufficiency is present, most likely aldosterone production is still adequate. Therefore, the mineralocorticoid content of hydrocortisone may be unnecessary and would contribute to the fluid retention. A switch from hydrocortisone to prednisone may solve that issue. The dose of prednisone should then be adjusted to keep you comfortable and to avoid gaining any fat. Please discuss this with your endocrinologist.



22) Q&A from the June, 2021 NADF newsletter:

QUESTION: I have primary adrenal insufficiency (PAI). Recently I was diagnosed with Valley Fever. What do you know about treating Valley Fever in people with PAI? Before the serology tests were known, my doctor mentioned the possibility of treating me with Fluconazole.

ANSWER: Valley Fever is a fungal infection caused by coccidioides. It is often quite mild and may resolve without treatment. In its severe form, it can cause pneumonia and sometimes meningitis. Severe Valley Fever is treated with antifungal medications, most often fluconazole. Adrenal insufficiency is a risk factor for more severe disease and its complications. Therefore, if the diagnosis is confirmed, treatment is likely to be advised. Unfortunately, the common side effects from fluconazole include nausea, dizziness, vomiting and diarrhea, all symptoms that occur in poorly controlled adrenal insufficiency. Clearly, treatment must be closely monitored. Extra doses of hydrocortisone may be necessary to cover the side effects of the medication.



23) Q&A from the September, 2021 NADF newsletter:

QUESTION: My husband has primary adrenal insufficiency (since age 10) and is scheduled for a vasectomy. His endo suggested he up-dose that day. Should we be concerned about the chance for crisis? Is there anything special he or his doctor should do? Is he at “higher risk” during surgery or recovery?

ANSWER: Vasectomy is a minor surgical procedure, usually performed under local anesthesia. A double dose of the usual morning hydrocortisone will probably be sufficient. To be safe about any possible adrenal insufficiency issues post-op, the endocrinologist should communicate with the urologist about the adrenal insufficiency and have IV hydrocortisone available if needed.



24) Q&A from the March, 2022 NADF newsletter:

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.



25) Q&A from the March, 2022 NADF newsletter:

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.



26) Q&A from the March, 2022 NADF newsletter:

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.​



27) Q&A from the June, 2022 NADF newsletter:

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.



28) Q&A from the June, 2022 NADF newsletter:

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.



29) Q&A from the June, 2022 NADF newsletter:

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.



30) Q&A from the September, 2022 NADF newsletter:

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.



31) Q&A from the September, 2022 NADF newsletter:

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.



32) Q&A from the September, 2022 NADF newsletter:

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.



33) Q&A from the September, 2022 NADF newsletter:

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.



34) Q&A from the March, 2023 NADF newsletter:

QUESTION: Do you know if it’s common for someone to get Addison’s Disease as a result of immunotherapy for treating cancer?

ANSWER: Yes, we do know that immunotherapy that is used for variety of cancers can cause adrenal insufficiency. It can actually cause primary or secondary adrenal insufficiency. When the medications activate the immune system, they can induce autoimmune adrenal insufficiency that injures the adrenal glands—Addison’s disease. Another pathway is to cause autoimmune hypophysitis. This is inflammation in the pituitary. That inflammation may reduce the production of ACTH, leading to secondary adrenal insufficiency, plus disruption of other pituitary hormones, including thyroid and gonadal function. The most common endocrine effect from these medications is thyroid changes—either hyperthyroidism or hypothyroidism. Sometimes these effects may resolve over time.



35) Q&A from the March, 2023 NADF newsletter:

QUESTION: Would it be appropriate for someone with primary adrenal insufficiency to get the pneumococcal vaccine?

ANSWER: I do recommend that anyone with adrenal insufficiency get the pneumonia vaccination. The current one is the Prevnar 20.



36) Q&A from the September, 2023 NADF newsletter:

QUESTION: I have pituitary gland lymphocytic hypophysitis which causes central adrenal Insufficiency. I have been on 15mg hydrocortisone and 5mg stress dose since with stress dose at triple dose since 2014. Can you develop avascular necrosis from long term steroids? I am 44 years old and in 7 months have had a total Right hip and left knee replacement. I don’t have osteoporosis. The suspicion by the orthopedic surgeons is steroid use. He said that it does not matter how little a dose you are on. Is this correct?

ANSWER: Yes, avascular necrosis can occur from steroid use, regardless of the dosage or length of use. Although we most commonly see it in people given high doses for various diseases, it can occur with replacement doses for primary or secondary adrenal insufficiency. There is no way to anticipate this unfortunate complication. I have also seen it in individuals who never took steroids, so the precipitating factors are complicated. Obviously, no one should avoid taking steroids when indicated because of fear of this fairly unusual disorder.



37) Q&A from the September, 2023 NADF newsletter:

QUESTION: I use budesonide as a treatment for my adrenal insufficiency, as prescribed by my endocrinologist, due to some other complications. Perhaps you can add it to your roster sometime.

ANSWER: Budesonide is a glucocorticoid that has two clinical uses - inflammatory bowel diseases (Crohn's disease and ulcerative colitis) and asthma. When taken orally, it treats inflammatory bowel disease within the intestine. It is very poorly absorbed into the bloodstream, which makes it attractive as a gastrointestinal therapy because it has much less glucocorticoid effect on the body while suppressing the GI inflammation within the bowel. It has been used for many years, touted as a safer alternative to prednisone for these diseases. Similarly, budesonide has been used in inhalers for asthma because it is poorly absorbed and less likely to have significant steroid side effects. Budesonide should not be used to treat adrenal insufficiency. For primary and secondary adrenal insufficiency, you need a potent, consistent, and rapid absorption of the glucocorticoid. Budesonide does not do this.



38) Q&A from the September, 2023 NADF newsletter:

QUESTION: I have frequent urination. Sometimes I will make several trips to the bathroom, and it seems like within seconds. Could this be symptoms of low cortisol?

ANSWER: Frequent urination is not a symptom of adrenal insufficiency. Causes can include urinary tract infection, bladder dysfunction in older people, diabetes, use of diuretics, and enlarged prostate in men. Talk to your primary doctor. If it is new, start with a urinalysis and urine culture.​



39) Q&A from the December, 2023 NADF newsletter:

QUESTION: Does adrenal insufficiency cause memory decline?​

ANSWER: There is very little research on this topic. The few articles published have tried to summarize the results of several small studies of cognitive function in individuals with Addison's disease. They found an increase in attention deficit patterns and temporary reduction in episodic memory, but no evidence of long-term permanent memory decline or dementia. There is a review article of memory disorders in a variety of glucocorticoid disorders, but it includes diseases of glucocorticoid excess as well as adrenal insufficiency. I found no significant data pertaining to adrenal insufficiency. Keep in mind that memory decline is usually complicated. So many factors will affect memory, including age, overall health, neurologic disorders, medication, and genetics. In my clinical experience, I have not seen adrenal insufficiency to be a significant primary cause of memory decline or dementia.



40) Q&A from the December, 2023 NADF newsletter:

QUESTION: My neuroendocrinologist's NP wants to know if a metyrapone test or CRH stim test for adrenal insufficiency are acceptable tests for accurate diagnosis.

ANSWER: Testing for adrenal insufficiency varies according to the baseline condition being investigated. For the most common situation where one is trying to rule out primary adrenal insufficiency, a baseline cortisol and ACTH level, plus, if needed, an ACTH stimulation test is sufficient. Since you are inquiring about a neuroendocrine condition where there may be a component of secondary adrenal insufficiency, the work up is different. The typical issue is the evaluation of either baseline function of the hypothalamic-pituitary-adrenal axis after discovery of a pituitary tumor or hypothalamic tumor, or the evaluation of the axis immediately after removing a tumor. In both situations, the metyrapone test gives the best information. The CRH stimulation test may give a falsely normal result if performed too soon after a tumor is removed. The CRH test is most useful in a totally different scenario as a test for localization of the cause of Cushing's syndrome.



41) Q&A from the December, 2023 NADF newsletter:

QUESTION: Is menopause different for someone with primary adrenal insufficiency? I had surgical menopause last year at age 40, due to severe endometriosis and have not taken estrogen. I have always heard that surgical menopause causes more severe symptoms, such as more severe hot flushes. I have hot flushes, but I think they are milder to moderate. I wondered if my Addison's disease impacted this. Also, does menopause impact hydrocortisone dosing or cause more instances of needing minor stress dosing?

ANSWER: The symptoms caused by menopause are highly variable - from devastating hot flushes, insomnia and mood changes to no symptoms at all. It is true that surgical menopause tends to be associated with more severe symptoms due to the sudden loss of all estrogen production in contrast to the normal prolonged and intermittent reduction in hormone levels in natural perimenopause and menopause that may take many months or years. But, again, there is a wide range in an individual's experience. Addison's disease generally has little effect on the age of menopause or the severity of symptoms. If symptoms are severe and lead to inadequate sleep, there may be a sense of extra stress that may benefit from an occasional extra dose of hydrocortisone. However, it is unlikely to require a chronic change in the steroid regimen. If symptoms remain severe and have a dramatic effect on quality of life, I recommend a discussion about hormone replacement therapy with your endocrinologist and gynecologist. Adrenal insufficiency is not a contraindication for hormone replacement. The risks and benefits are the same as for women without adrenal disease. If hormone replacement is needed, both estrogen and progesterone would be used for women with an intact uterus. After a hysterectomy, with the uterus removed, there is no need for the progesterone. Most doctors recommend the lowest dose that prevents the symptoms.



42) Q&A from the December, 2023 NADF newsletter:

QUESTION: Should I be concerned about elevated enzyme liver levels with Addison’s disease?

ANSWER: Liver enzymes can be elevated for a variety of reasons. It can be a sign of serious liver disease or sometimes just a reaction to a recent viral illness. It is very important to discuss the significance with your primary doctor to understand if it requires further evaluation. The elevation itself is simply a sign, not a diagnosis. The underlying cause must be established. Regardless of the liver diagnosis, Addison's disease would not cause the enzyme elevation. However, if there is a serious liver disease, it may have an impact on your sense of wellbeing, including appetite and energy. This might affect your need for stress doses of hydrocortisone. Start with a thorough discussion with your doctor.



43) Q&A from the March, 2024 NADF newsletter:

QUESTION: Is it possible to have both PAI & SAI?​

ANSWER: primary adrenal insufficiency is due to damage, destruction or removal of both adrenal glands, leading to deficiency of both glucocorticoids (cortisol) and mineralocorticoids (aldosterone) and is treated with replacement hydrocortisone and fludrocortisone. Secondary adrenal insufficiency is due to a suppression or absence of secretion of ACTH from the pituitary gland in the head. The lack of ACTH stimulation to the adrenal glands leads to a deficiency of cortisol, but usually does not affect aldosterone production. Therefore, treatment is usually with glucocorticoids alone. The most common cause of SAI is the prolonged use of high dose steroids for other diseases, suppressing ACTH. If that is the cause, recovery may be possible if the steroid treatment can be tapered and discontinued. When ACTH deficiency is due to pituitary or hypothalamic disease or tumors, recovery is less likely. The possibility of PAI and SAI at the same time is unlikely, but not impossible. One scenario is SAI from steroid use and then a coincidental development of autoimmune adrenal disease or bilateral adrenal hemorrhage causing destruction of the adrenal glands. The most important issues in management are understanding whether there is a need for mineralocorticoid replacement and whether there is a potential for recovery.



44) Q&A from the September, 2024 NADF newsletter:

QUESTION: Can you clarify if opioids lower cortisol absorption, or cortisol produced by the body? Should patients with adrenal insufficiency avoid taking opioids, or should they increase the dose of hydrocortisone? Is Tylenol better than Advil?

ANSWER: Chronic opioid users develop some degree of adrenal insufficiency. The mechanism is suppression of the hypothalamic-pituitary responsiveness to the need for cortisol, so there is a relative deficiency of ACTH stimulation to the adrenals, resulting in inadequate cortisol production. It has been estimated that between 9 to 29% of chronic opioid users develop some degree of adrenal insufficiency. The mechanism is suppression of the hypothalamic-pituitary responsiveness to the need for cortisol, so there is a relative deficiency of ACTH stimulation to the adrenals, resulting in inadequate cortisol production. Those with primary adrenal insufficiency or secondary adrenal insufficiency are already on replacement doses of glucocorticoids. They can take opioids if needed for pain and do not need to adjust their hydrocortisone doses unless the stress of pain is excessive. Tylenol (acetaminophen) and Advil (ibuprofen) in the usual doses are equivalent as pain medications, but ibuprofen has more anti-inflammatory effects. Neither one is an opioid and neither has an effect on cortisol.



45) Q&A from the December, 2024 NADF newsletter:

QUESTION: I was diagnosed with Addison's Disease(primary) last month and have been put on hydrocortisone. I am finding that it is causing mild depression. I have complication with heart issues having 2 stents. I do not want an antidepressant that causes weight gain - that would only add to my depression. Any suggestions?​

ANSWER: Depression is a very common disorder and should be addressed with your physician. Medication and psychotherapy can be very effective. Although some of the antidepressants can contribute to weight gain, that should not be the only factor to consider. I will not make specific suggestions. Discuss your concerns with your physician or psychiatrist.



46) Q&A from the June, 2025 NADF newsletter:

QUESTION: My creatinine levels are above normal at 1.18 and have been running above 1.0 for years. Now the doctors are throwing around “chronic kidney disease”. What is the relationship between these levels and Addison’s? Is it something most of us with primary Adrenal insufficiency have?​

ANSWER: Creatinine levels reflect kidney function. There are slight variations in the normal range at different labs, but a typical sample normal range is 0.60 - 1.30 for males, 0.50 - 1.00 for females. When there is a persistent elevation, doctors will label it as chronic kidney disease, but that does not necessarily mean it will progress and become severe enough to require treatment like dialysis. In addition to monitoring creatinine, tests for BUN (blood urea nitrogen) and GFR (glomerular filtration rate) should be followed. It is common to find a single elevated test due to a recent illness, especially if it led to dehydration, or the test is performed after a prolonged interval without fluid intake. Addison’s disease does not directly cause kidney injury. If there is a progressive worsening of kidney function, a consultation with a nephrologist (kidney specialist) is necessary.



47) Q&A from the September, 2025 NADF newsletter:

QUESTION: I have had primary adrenal insufficiency since 1978. I just found out I have arthritis. The pain is from my hip all the way down to my foot. Can this cause more stress? It’s very painful. How do I compensate with hydrocortisone, or do I need to?​

ANSWER: Arthritis, whether typical osteoarthritis or the various forms of autoimmune arthritis, such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and lupus, can cause significant pain and inflammation. Pain is a stressor, so individuals with adrenal insufficiency may need to adjust their steroid regimen to help deal with it. The preferred approach is to utilize therapies that may diminish the inflammation and pain produced by the disorder. If there is less pain and inflammation, there will be less of a need to supplement with steroids. There is no simple formula for the steroid dose for pain. If anti-inflammatory therapies and analgesics are inadequate, try adding a very low dose of hydrocortisone when needed, but try to resume your usual dosage if the pain subsides.



48) Q&A from the September, 2025 NADF newsletter:

QUESTION: Have there been any studies that suggest any links to taking steroids for long periods leading to bipolar and mood disorder? I’m wondering if there is any awareness towards this since the primary control of Addison's is with steroids.​

ANSWER: The cause of bipolar disorder is uncertain. There is no evidence that maintenance doses of glucocorticoids to treat adrenal insufficiency cause it. However, high doses typically used to treat other diseases can have dramatic effects on mood, including acute psychosis, and inadequate glucocorticoid replacement can contribute to anxiety and depression.





Questions are normally submitted by NADF members.
Answers are from NADF's Medical Director Paul Margulies, M.D., FACE, FACP.

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NADF does not engage in the practice of medicine. It is
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knowledge. In all cases, NADF recommends that you consult your
own physician regarding any course of treatment or medication.





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