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Found 73 matches in 36 Q&A's.


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

QUESTION: Could being on hormone therapy (estrogen, testosterone, progesterone) affect the outcome of an ACTH test?

ANSWER: The answer to the question is no. None of the gonadal hormones affect the ACTH-adrenal axis, and therefore the standard ACTH stimulation test is not affected. The one exception is the use of Megace, a potent progesterone used to improve appetite in cancer patients. This drug can suppress adrenal production of cortisol.



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

QUESTION: How long do you have to be off cortisol before you can get an accurate ACTH stimulation test result? Example: A patient is on Cortef. His doctor takes him off the Cortef and prescribes dexamethasone. How long should they wait before doing the ACTH stimulation test?

ANSWER: I assume the work-up is to rule out Addison's disease. In that case, I would wait at least two weeks after the switch to dexamethasone, hold the morning dose and then give the standard ACTH stimulation test. There is no journal article to quote regarding my recommendation for two weeks on dexamethasone. It reflects my bias from many years of clinical practice during which patients were sometimes referred to me on unknown doses of various steroid preparations, sometimes including intramuscular and topical steroids, and I was asked to determine if there really was underlying adrenal insufficiency. The point is that all cortisone or any other glucocorticoid that might be measured as cortisol in serum or urine assays must be totally cleared from the body before performing the stimulation test. In addition, one would like to allow the pituitary to readjust to a reasonable dose of glucocorticoid that avoids severe suppression of ACTH that might have occurred while on high dose cortisone. This will allow measurement of baseline plasma ACTH before the administration of the Cortrosyn, enhancing the value of the test. By the way, in cases where autoimmune Addison's is suspected, I recommend adding a blood test for 21-OH adrenal antibody for confirmation.



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 December, 2006 NADF newsletter:

QUESTION: Why do some secondary adrenal insufficient patients (either from pituitary non-function or adrenal atrophy from long-term cortisol prescription use) end up needing to take aldosterone replacement medication?

ANSWER: Aldosterone is primarily regulated by the kidney. When blood volume drops, the kidney makes renin, which then stimulates the production of angiotensin, which is metabolized in the lung, and then stimulates the adrenal to produce aldosterone and increase sodium retention and potassium excretion and increase blood volume. This mechanism usually does not require the pituitary, and therefore most people with secondary adrenal insufficiency (who lack ACTH) have only cortisol deficiency, but still maintain adequate aldosterone production, since their adrenals are intact. However, there are some people (about 10% of the population) who do seem to need ACTH stimulation to maintain their renin-aldosterone balance. These people wind up with high potassium levels despite prednisone treatment, and they do respond to fludrocortisone (Florinef®), or may be managed with hydrocortisone in place of just prednisone alone.



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

QUESTION: I have been an Addisonian for seven years now and was diagnosed with Hashimoto's 12 years ago. Recently my endocrinologist decided to add Cytomel to my Synthroid (to help me with energy fatigue, etc.) and it really has helped me feel better. I used to struggle to get through a week of work, kids, family, house,etc. By Friday I was an absolute mess. My doctor thought this might help and it truly did! However, it appears to be causing problems with the absorption of my Cortef/Florinef. She recently ran an ACTH level to make sure that I was not having a problem with that, and the ACTH should have been in the range of 4-58 and my test level was at 312! She wants to just increase my Cortef/Florinef temporarily and see if that helps, but I am not comfortable with increasing it. I don't really want to stop the Cytomel because it has really made a large difference in how I feel, but do I need to be worried about my ACTH levels being so out of range? Do you have any information on Addison's patients taking Cytomel?

ANSWER: Cytomel is T-3, a form of thyroid hormone that the thyroid secretes in small amounts. Most of the thyroid hormone secreted is in the form of T-4. It turns out that there is adequate conversion of T-4 to T-3 outside the thyroid to keep the level normal in people given only T-4 (Synthroid). There has been a lot of research on the issue of whether hypothyroid patients benefit from adding T-3 to T-4, rather than just increasing the dose of T-4. In carefully controlled studies, it does not help. I do not use it myself. A major drawback to using T-3 is the short duration in the body, which can cause misleading blood test results.



7) 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.



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

QUESTION: How long does it take for Addison's disease to develop? Years, months? Our son was generally a healthy person, but he does have a history of asthma when he was young. Also, he does have an unusual pigmentation on his skin that first showed up (very slightly) when he was barely two years old. When he was in his young teenage years, freckles showed up on his body, again in a very unusual pattern. A dermatologist said that it was unusual but did not see any medical problems and did not mention a possibility of hormone deficiency as a reason for the skin pigmentation.

ANSWER: Autoimmune Addison's disease has a very variable onset, but probably takes several months to a few years for the injury to the adrenals to get to the point where signs and symptoms appear. It is unlikely that hyperpigmentation in a 2 year old would be a sign of Addison's disease that developed years later. Hyperpigmentation reflect high levels of ACTH and would generally be seen in symptomatic individuals.



9) Q&A from the June, 2008 NADF newsletter:

QUESTION: I'm a 67-yr. old female with Addison's and hypothyroidism. My concern is my fluctuating, sometimes very high ACTH numbers, which I started logging in 1989. I'm frightened of an increased hydrocortisone dose. My stomach is quite distended since the beginning of year and I have gotten thick in waist area. I have also developed terrific loss of bone in my jaw the last few years. I felt much better on a lower dose. My question is: What is the highest “safe ACTH read" recorded? I know we all react differently to some medications and I really do not want to take more steroids. I sometimes feel they do more damage than good. PLEASE HELP!

ANSWER: Stop measuring ACTH. The level has no clinical value after the initial diagnosis of Addison's disease. The dose of hydrocortisone should be adjusted to the clinical response - sense of well being, energy, stamina, weight gain or loss, blood pressure fluctuations, appetite, etc. It is important to take enough hydrocortisone to eliminate the symptoms of adrenal insufficiency while avoiding excessive replacement that will cause signs and symptoms of cortisol excess. Useful blood tests include electrolytes (sodium and potassium), and plasma renin (especially for adjusting the dose of fludrocortisone). If there is significant hyperpigmentation despite hydrocortisone, this is a clinical sign of high ACTH. Usually the hyperpigmentation will resolve when the dose is adequate, but may temporarily return at times of stress. This can be useful as a guide to therapy, but should be used in conjunction with the other signs and symptoms of adrenal insufficiency in making adjustments in dosage.



10) Q&A from the June, 2008 NADF newsletter:

QUESTION: In order for a pediatrician to refer a child to a pediatric endocrinologist, must the blood work show low NA and high K, or can other symptoms suffice? Does someone with Addison's ALWAYS have low NA and high K? Thanks!

ANSWER: Abnormal electrolytes can be a useful sign of adrenal insufficiency, but they are not a necessary clue. A referral should be made if there are significant symptoms and physical findings. Some Addisonians have an abnormal ACTH stimulation test in the absence of electrolyte abnormalities.



11) Q&A from the September, 2008 NADF newsletter:

QUESTION: I have secondary adrenal insufficiency due to a depletion of ACTH. Should I take Cortef or Prednisone and in what amounts? I am a 5'1" tall 49-year-old female. I was put on Cortef two years ago because of subcutaneous inflammations and was told the Prednisone thins the layers of skin. Is this true. I've been taking 15 mg in the morning and 5 mg in the afternoon. I have been gaining weight on this med to the tune of 1/2 pound a month, steadily gaining 20 pounds. Any ideas as to what I should do?

ANSWER: Most people with secondary adrenal insufficiency have normal mineralcorticoid production (aldosterone) and lack only glucocorticoid production. Therefore, they can do very well with prednisone as their replacement steroid taken once every morning. Cortef has some mineralcorticoid activity which can raise blood pressure, and it is usually taken in 2 doses. Thinning of the skin, bruising, stretch marks and “Cushingoid" weight gain are due to the total dosage of the glucocorticoid, not the preparation. So, if you need the blood pressure assistance or potassium suppression from the Cortef, you can stay on it, but you may consider a smaller dose. Or, you can switch to prednisone and try a dose of 3 or 4 mg per day. All of these choices must be discussed with your own doctor.



12) Q&A from the December, 2010 NADF newsletter:

QUESTION: I go to an endocrinologist about 3 times a year due to my thyroid. He does additional blood work. Since 2008 my ACTH has been below normal and continues to decline. The most recent test in May was <5. He says he doesn’t think it is a problem. He also suggested I could go to another doctor for further evaluation if I desired. I am not wanting to chase rabbits or spend a lot of time and money on doctors, however, I wonder if this is something I should look into to a greater extent.

ANSWER: It appears that your doctor includes an ACTH level as part of the routine blood testing. I think that is not appropriate. It is expensive and often misleading. ACTH levels are only useful as part of an evaluation of clinical features of adrenal insufficiency or cortisol excess. An afternoon plasma ACTH less than 5 is normal.



13) Q&A from the December, 2010 NADF newsletter:

QUESTION: My naturopathic doctor gave me a saliva adrenal test a few weeks ago. My cortisol levels were 1 for the morning, 1 for noon, less than 1 for the afternoon and less than 1 for midnight. When I called my endocrinologist and told them the results of the test, they told me that it was not reliable. Last month was the first time I have ever heard about Addison’s disease. I was diagnosed with hypoglycemia 24 years ago with my 1/2 hour fasting glucose level of 26. The doctor who diagnosed me left practicing medicine soon after that and no other doctor has done anything for it since. I read that in Addison’s disease low cortisol can cause hypoglycemia. I do have many symptoms that show I have problems with my adrenals. Is the saliva test that unreliable that my cortisol could be normal? Do you have any advice that could help me? Thank you.

ANSWER: Salivary cortisol tests are accurate if performed in a reputable clinical laboratory. There are many labs out there that are used by practitioners who are not physicians and I have seen many test results over the years that I do not trust. I would not recommend salivary cortisol testing to rule out Addison’s disease. Blood tests before and after ACTH (Cortrosyn) are the standard. The major use of salivary cortisol is in testing for Cushing’s syndrome, where midnight cortisol levels are abnormally high, and it is more convenient to do a saliva test rather than a blood test.



14) Q&A from the September, 2011 NADF newsletter:

QUESTION: Since your adrenal glands help your memory, does that have any effect on why I can’t remember things and how will it affect us later? I was watching ‘60 Minutes’ and they had this interesting thing on people who have special memories and they mentioned your adrenal glands having alot to do with it, so I was just curious if I was just losing it or I ‘have a good reason’.

ANSWER: Unfortunately there is not much to say. Certainly, when there are extremes of cortisol levels - both high and low, there can be mood and cognitive changes, but they should improve with treatment. We know that people with severe depression have a blunted ACTH-cortisol response, but this is not generally found in people with memory loss. To my knowledge, the neurotransmitters involved with memory are not directly influenced by cortisol. There is much work being done in the field of memory and its treatment and hopefully new therapies will be found soon.



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

QUESTION: Is it okay to stay on fludrocortisone acetate while undergoing the ACTH stimulation test?

ANSWER: It is OK to stay on fludrocortisone while doing a Cortrosyn test.



16) Q&A from the June, 2012 NADF newsletter:

QUESTION: What does it mean when the cortisol level is lower in the morning, and higher in the late afternoon-evening?

ANSWER: Normal people have a peak cortisol level just before they wake up in the morning and the level gradually decreases through the day, usually reaching near zero by midnight. Typically, people with adrenal insufficiency have lower than normal cortisol levels all the time, but the values may overlap with normal, so an ACTH stimulation test is more accurate in sorting out whether there is a normal reserve. People with Cushing’s syndrome have cortisol levels higher than normal, but again it can overlap with normal. However, in Cushings there is usually a lack of variation during the day, and the midnight cortisol is elevated rather than zero. As to why someone might have an inverted cycle, it depends. There may be a missleading inversion if that person is taking any steroid preparation, which may supress the morning value. If there is much stress, normal people can increase their cortisol production in the afternoon. It is important to look at the clinical context, the use of medications that might affect the values, and the absolute numbers for that time of day.



17) Q&A from the December, 2012 NADF newsletter:

QUESTION: I know woman who had her Cushing’s syndrome treated by the removal of one of her adrenal glands, and is hoping to keep the other gland by taking medication. Is it possible for a woman with Cushing’s to this extent to become pregnant and carry to full term?

ANSWER: The clinical situation is not very clear. If the Cushing’s syndrome was due to a benign tumor of one adrenal gland, and that was removed, then the medication would likely be a replacement glucocorticoid such as prednisone taken while waiting for the other suppressed adrenal to return to normal function. If that is the case, pregnancy is possible while still on the prednisone, but will require close monitoring. If, however, the diagnosis is really Cushing’s disease due to a pituitary ACTH producing tumor, then the adrenal surgery would not cure the Cushing’s and the medication is suppressing adrenal function. In that case, pregnancy would not be feasible because the medication would affect ovarian and placental function.



18) 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.



19) Q&A from the September, 2013 NADF newsletter:

QUESTION: I was diagnosed as adrenal insufficient due to very low levels of cortisol in saliva and urine tests, and also have a hypothyroidism. I was on only a fourth of a pill of Nature’s Thyroid for 6 years. I could never raise it any higher without going into what I now know was adrenal crisis. Now that I am on Cortef, when I tried to take an eighth more, I went into crisis again. I asked my doctor to switch me to T3 only. He did it, but said that it isn’t good, because it will eat up all my cortisol and mess up my adrenals. What should I do?

ANSWER: First, I suggest a more accurate diagnosis of adrenal insufficiency than just salivary and urine cortisol levels. An ACTH stimulation test is the best way for most Addisonians. Second, I never use desiccated thyroid or pure T3 to treat hypothyroidism. The best therapy is levothyroxine (T4) with the dose appropriately adjusted based on symptoms as well as TSH levels. It is important to remember that the proper TSH level to aim for varies from person to person, so personal comfort and symptoms count. We don’t stop with a “normal TSH” because some will feel best with a TSH in the low normal range and others will feel best with a TSH in the mid or high normal range. Work with your endocrinologist!



20) Q&A from the September, 2013 NADF newsletter:

QUESTION: I have been seeing a doctor to try and diagnose a mystery illness I’ve been suffering for 2 years now. Some of the tests I’ve had done indicate adrenal insufficiency, but I’ve been told by an endocrinologist with my most recent tests that I am not adrenal insufficient. I’m very confused. Do some tests matter more than others for diagnosing adrenal insufficiency?

ANSWER: Lab results by themselves can be misleading. The full clinical context; history, physical exam, medication history, and other basic lab results are all critical in making a diagnosis of adrenal insufficiency. Although I cannot give you a definitive answer, a normal response to an ACTH stimulation test is not diagnostic of adrenal insufficiency. If other aspects of your history points toward Addison’s disease, I suggest that your doctor add 21OH antibodies to test for autoimmune Addison’s. If your history is more suggestive of secondary adrenal insufficiency, this test is not useful.



21) Q&A from the December, 2013 NADF newsletter:

QUESTION: I had an ACTH stim test done to see if I was adrenal insufficient. I started at a cortisol level of 8, but dropped to 7.2. The RN said she had never seen a cortisol level drop before as a reaction to ACTH. I also have an aldosterone level of 3.8 (sitting) and a clean visual field test. I also had a recent severe drug allergy to aldactone. Is this normal for an Addison’s disease diagnosis?

ANSWER: If there was no recent exposure to steroids, the test shows an abnormal pattern, with failure of cortisol levels to increase after ACTH. That would be consistent with Addison’s disease. The fact that the level appeared to go down is not important. The two results are basically the same, and the failure to rise from a normal or low level is what is most important. But certain medications, including aldactone; which is used to treat hyperaldosteronism, can blunt an ACTH test.



22) Q&A from the December, 2016 NADF newsletter:

QUESTION: Someone on one of my support forums gave me your site to contact because of recurring issues with ACTH levels. Just a bit of history for you so that you can help me as much as possible. I am a 43 year old female that was diagnosed with Cushing's syndrome due to both an adrenal adenoma as well as a pituitary adenoma. In 2009 I had two surgeries on my pituitary to remove the adenoma. When ACTH levels were not suppressed they did a bilateral adrenalectomy. I was doing great up until late this year. Pigment started getting really dark, fatigue has sat in to a great extent, stomach pain, diarrhea, vomiting on many of the days out of a week. Headaches have returned with some double and sometimes blurry vision. I am not losing weight again, and my mood swings are back, and I am very depressed. Endo did checks on my test and the first one was 496 at 9:00am and the second test he did was a suppression test, with levels only going down to 240 at 8:00am. I do not know what to demand at this point. I am once again feeling horrible and only know that as time goes on I will be worse. Can you please suggest a plan of action for me?

ANSWER: The elevated ACTH levels suggest that she may be developing Nelson's syndrome. This is a complication of the management of Cushing's disease (pituitary origin) with bilateral adrenalectomy. The remaining pituitary adenoma that was causing the Cushing’s, and was unsuccessfully resected, may now be growing and making larger amounts of ACTH than ever. If that is the diagnosis, it can be quite serious if not treated. The pituitary tumor may grow rapidly, causing compression of the remaining pituitary gland, leading to deficiencies of other pituitary hormones. The effect can be hypothyroidism, growth hormone deficiency, hypogonadism and sometimes diabetes insipidus. Also, if the tumor is large, it can compress the optic chiasm and cause loss of vision and headaches. The endocrinologist should evaluate all of these possibilities with lab tests, visual fields and a repeat pituitary MRI. If Nelson’s syndrome is diagnosed, therapy with medication (cabergoline and Sandostatin), radiation therapy or repeat pituitary surgery to remove the tumor can be successful. Appropriate replacement treatment for the surgical Addison's disease with hydrocortisone and fludrocortisone is essential. If hypopituitarism is present, replacement of the missing hormones is also a vital part of the management.



23) Q&A from the December, 2016 NADF newsletter:

QUESTION: Is it possible to have a low aldosterone level (close to the bottom of the scale) and low renin, but to have normal cortisol, electrolytes, and ACTH test? I suffer from low blood pressure. Can low aldosterone cause swelling of the submandibular salivary gland (the swelling is non-inflammatory, it is painless, bilateral and permanent), or abnormal fat distribution in the upper body? My lower body doesn't look swollen. And can low aldosterone somehow cause multiple aphtea/erosions/ulcers in the small intestine (that isn’t Crohn’s or Celiac disease)?

ANSWER: Hyporeninemic hypoaldosteronism is fairly common. It is caused by a defect in the kidneys. The signs are low blood pressure, a further drop in blood pressure on standing, and high potassium. In contrast to Addison's disease, people with this syndrome have normal levels of cortisol and ACTH. The treatment is replacement fludrocortisone (Florinef ) without the need for hydrocortisone. Many people with this syndrome have diabetes mellitus. Even if blood sugars are normal, the physical features of insulin resistance (the major cause of adult onset diabetes) include increased body fat in the middle of the body as well as swelling of the salivary glands. It would not generally include ulcers or changes in the small bowel.



24) 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.



25) Q&A from the March, 2018 NADF newsletter:

QUESTION: What are the effects of chronic ACTH overproduction from a tumor associated with Nelson’s Syndrome, on a person that has had an adrenalectomy?

ANSWER: People with Nelson's syndrome have two issues: The overproduction of ACTH is accompanied by excess melanocortin, which causes darkening of the skin. The other issue is that the ACTH producing tumor may grow and cause local anatomical damage in the sella, including compression of the remaining pituitary tissue and compression of the optic nerves. If that happens, surgery or radiation therapy may be needed.



26) 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.



27) Q&A from the June, 2019 NADF newsletter:

QUESTION: I was diagnosed with secondary adrenal insufficiency due too long term use of prescribed hydrocortisone; 25 mg/day since 2008. I have tapered dosing over the past 2 years and my latest ACTH level was below 5. For the past 2 months I have only taken a total of 55 mg per month. My low blood pressure has stabilized to normal levels and my blood pressure now elevates on days that I take any hydrocortisone. I have been receiving intermittent kenalog injections to my left trochanter for bursitis and the same injections into bilateral heels for plantar fasciitis. My new endocrinologist says I will go into adrenal crisis once kenalog is out of my system. Is this accurate? I want to be off steroids or at least lowest possible maintenance dosing. How can I achieve my goals?

ANSWER: The kenalog injections complicate the management of the secondary adrenal insufficiency because they produce a very high level of glucocorticoid for several days followed by a slow reduction. During that time, ACTH is suppressed. Try to avoid the injections going forward. In the meantime, your endocrinologist may have to increase your hydrocortisone maintenance for a while before tapering again.



28) 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.



29) 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.



30) Q&A from the March, 2021 NADF newsletter:

QUESTION: I would appreciate any advice about adrenal insufficiency that is caused by opioid use, especially how it might affect treatment compared to other cases of AI.

ANSWER: Opioid-induced adrenal insufficiency is quite common. 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. This can produce a full spectrum of adrenal insufficiency symptoms, from negligible to full adrenal crisis if there is an acute precipitating illness or injury. The diagnosis is confirmed with a blunted cortisol stimulation test, but simply finding a low AM serum cortisol with a low ACTH level is sufficient. This is a form of secondary adrenal insufficiency, not Addison’s disease. The treatment is the same as other forms of secondary adrenal insufficiency: usually hydrocortisone, but prednisone would also work. There is no need for fludrocortisone. Some important notes: OIAD is more likely with higher doses of opioids and longer duration of usage. It is potentially reversible if opioids can be discontinued. Finally, since the need for replacement glucocorticoids will increase in times of stress, if pain is not controlled with the opioid use, a higher dose of glucocorticoids may be needed.



31) Q&A from the March, 2021 NADF newsletter:

QUESTION: My symptoms started 12 years ago but have gotten progressively worse over the last 3 years. Often, I find it hard to move and have to rest. I have a lot of symptoms such as fatigue, nausea, dizziness, 20-pound weight loss, vomiting, abdominal pain with no clear cause besides IBS, etc. I am on a high salt diet and have been prescribed a 0.05 mg dosage of fludrocortisone for a high heart rate due to POTS.

ANSWER: With the diagnosis of POTS and chronic fatigue syndrome, the symptoms are typical, including the GI symptoms. It is not possible to make an actual diagnosis, but it would be useful to get a 21-OH adrenal antibody test. If positive, that would suggest Addison’s and should be followed by an ACTH stimulation test to assess adrenal reserve. If it is negative, a further GI evaluation may reveal the cause of the symptoms.



32) 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.​



33) 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.



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

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.



35) 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.



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

QUESTION: My son has Addison’s. When should he take his medications in preparation for lab tests?

ANSWER: The timing of lab tests will vary depending on what the clinician is looking for. If you are trying to assess the baseline adrenal function, the AM fasting cortisol and ACTH levels are useful, and must be obtained before any medication. If you want to assess the adequacy of replacement medications, blood tests for electrolytes and plasma renin may be taken anytime during the day after the normal dosing of medications in the morning and afternoon. This would not include serum cortisol or ACTH. If an ACTH stimulation test is performed, it must be before any glucocorticoid is taken.





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
not a medical authority, nor does it claim to have medical
knowledge. In all cases, NADF recommends that you consult your
own physician regarding any course of treatment or medication.





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