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Found 78 matches in 61 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 December, 2004 NADF newsletter:

QUESTION: Four years ago I had an operation for colon cancer that took 37 inches of my colon out. Since then it has traveled and is now in my lungs and may be in other places. I have talked with the cancer doctors who want me to take chemotherapy. I have studied the booklets they gave me and I have determined that I will be worse off if I get these treatments. There is Emend for controlling vomiting, then there is Eloxatin and Avastin for the chemo tube. I have been to the ER quite a few times with Addisonian problems and I simply cannot face this awful intrusion into my system. I was diagnosed with Addison's disease when I was 40 and could hardly walk. I am 73 now and get along pretty well. I have secondary Addison's and take 20 mg. of Cortef daily. Could you please advise me what I should do? I am strongly tempted to take the time I have left and enjoy it.

ANSWER: The decision you have to make regarding your quality of life with chemo is a difficult one. The coincidence of adrenal insufficiency should not be much of a factor in your decision, however. You will probably need to increase your dose of hydrocortisone to handle the stress and nausea, but that is the easy part. Doubling or even tripling the dose will have marginal side effects compared to either the chemo or the cancer. I have had many adrenal insufficiency patients undergo chemo and get through quite well. Good luck.



3) 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.



4) Q&A from the June, 2005 NADF newsletter:

QUESTION: Recently, my endocrinologist, while on a routine visit, lowered my Cortef (10 mg) to a total of 15mgs a day. I am 76 years old and have taken 30 mg of Cortef for the entire 38 years I have been diagnosed with Addison's. She states that ALL Addisonians are being similarly lowered to these levels. Do you know of any research that is ongoing concering this drop in corticosteroid level? I am not doing well on the low dose and must grab a 10 mg tablet many times over the course of a week.

ANSWER: Although it is true that 30 mg of hydrocortisone is probably more than enough for most otherwise healthy Addisonians, I think it is important to slowly change the dose on any stable patient with adrenal insufficiency. The symptoms that you have certainly suggest that you need more than 15 mg. I think it is a mistake to put all people in the same basket. There is a wide range of steroid requirement, from as little as 10 mg per day to as much as 50 to 60 mg. I find that most do well with 20 to 25 mg per day. I suggest that you talk to your endocrinologist about your response to the change in dose and try 25 mg for now.



5) Q&A from the June, 2005 NADF newsletter:

QUESTION: Are the new diet supplements that break down cortisol and “stubborn belly fat" dangerous for Addison's patients?

ANSWER: I've seen those adds for the diet pills that block cortisol, and they make me cringe! What is in there? I have no idea, but whatever it is, it can't be any good for anybody, especially anyone with Addison's disease. There are no currently available diet pills that are both safe and effective for anyone!



6) Q&A from the June, 2005 NADF newsletter:

QUESTION: Do you recommend a pneumonia shot or hepatis series for adrenal insufficient patients?

ANSWER: Pneumonia immunization is approved for anyone over 65, but I think it is useful for Addison's patients, too. They are good for six years. Frankly, an annual flu shot is probably more useful. The pneumonia shot only prevents pneumococcal pneumonia, not all upper respiratory infections. The hepatitis series of three injections is suggested only for medical personnel who would be exposed by needle sticks. It is not necessary for Addisonians.



7) Q&A from the March, 2006 NADF newsletter:

QUESTION: Is it common for Addisonian's to experience body aches, cramping and muscle spasms? What might be the cause? Is there any feedback data concerning successful treatment modalities from patients?

ANSWER: Untreated or poorly replaced Addison's disease can cause muscle spasms and cramps, especially in the abdomen. These symptoms usually resolve promptly with hydrocortisone because they are primarily due to the electrolyte abnormalities of untreated adrenal insufficiency (high potassium and low sodium). If a treated addisonian continued to have muscle cramps or aches when all the other symptoms have resolved, other causes should be sought, especially hypothyroidism which is very commonly associated with Addison's disease.



8) 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.



9) 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.



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

QUESTION: I have recently taken Augmentin antibiotic for an ear infection. After 7 days of taking the medication, I began to feel very weak, headachey, and nauseous. The 8th day I felt quite weak and nauseous as well but was able to take additional cortisone and keep that down. I finally “remembered" that this was the same reaction I'd had to Augmentin many years before so stopped taking it. What happened years ago was that I'd been on Augmentin for about a week, I saw a fill-in doctor on the weekend for dehydration, and he said that he had another Addisonian patient who reacted the same way to Augmentin. Do you have any information on the link between Augmentin, Addison's disease and Addisonian crisis? I'm sure there are other Addisonians who have reacted similarly to Augmentin.

ANSWER: Augmentin is a useful antibiotic, but the most common side effects of the drug are nausea and diarrhea. Anyone with Addison's disease is more sensitive to the sudden onset of nausea and diarrhea, and therefor will feel quite sick or even tend toward an adrenal crisis in this circumstance. Augmentin does not cause Addison's disease, but it can contribute to Addisonian symptoms because of the side effects. Addisonians should try to avoid medications that cause nausea, diarrhea or dehydration.



11) Q&A from the December, 2007 NADF newsletter:

QUESTION: I have had Addison's disease since 1972. Within the past year, I have had experienced low blood pressure more frequently than before. I have tried water, Gatorade, increased prednisone and fludrocortisone acetate, and am concerned that I am not getting a long-term solution. Any ideas or confirmation?

ANSWER: Low blood pressure is a cardinal feature of Addison's disease. Unless there is evidence of some other factor, my first response would be to increase the fludrocortisone acetate dose until the blood pressure is normal. I would expect your doctor to be able to document the need for an increased dose of fludrocortisone acetate by finding an elevated level of plasma renin and possibly as elevated serum potassium. I have many patients who need 0.3 mg of fludrocortisone acetate a day.



12) Q&A from the December, 2007 NADF newsletter:

QUESTION: I have just visited my new dentist and again, as with my other dentists, I was given an article on the dangers of using bisphosphonates such as Actonel and Boniva which I have been taking. In June 2006 when I first received this warning, I stopped taking them for six months. My doctors said this warning was mainly for cancer patients and I should continue the drug to prevent bone loss. My bone density test in December 2006 was good for my age and arthritis I have. I do take 1500 mg of calicium with viatmind D daily. My question is — should I continue with Actonel or Boniva? If so, whch do you reocemmend. Also, I suffer from back problems which it seems Addisonians are prone to. The MRI's do not reflect a cause for my type of terrible pain. My hips are fine. I am on 7 mgs. of prednisone; 0.1 mg am + 0.05 mgs fludrocortisone acetate (Impax - Global); 125 mcg Synthroid; 2-3 - 50 mgs of tramadol; 200 mg's Celebrex at night and sometimes 5mg Ambien to help sleep with pain. A multivitamin; the Calcium with D and Omega 1000. My question is: Do you think when I gave up my Premarin three or four years ago, did this cause my pain? Addisonian's don't make hormones that I know of. Could it be possible I need them? Could the lack of hormone be causing my pain? My doctor says, “we just don't know". So I would like your opinion. Thank you.

ANSWER: The back pain and risk of osteoporosis are totally separate. Osteoporosis does not cause symptoms unless there is a fracture. Arthritis, which is not part of the osteoporosis, causes pain. If you do have osteoporosis, you should take the calcium and vitamin D as well as a bisphosphonate. It can be Fosamax, Actonel or Boniva. They all work well to reduce the risk of fracture. They will not help with your back pain. The fear that the dentist has caused is totally inappropriate. The risk of osteonecrosis of the jaw is extremely unlikely with oral bisphosphonates. The only reason the dentist should be involved is if you actually have osteonecrosis, in which case you should stop the medication.



13) Q&A from the March, 2008 NADF newsletter:

QUESTION: Can anyone help us find a doctor who specializes in kidney stones, when the patient has Addison's. We have had two large kidney stones almost a year apart that had to be blasted. Our doctor said that the stones were caused by the Addison disease. Is this true? We would like a second opinion. Thank You.

ANSWER: Any endocrinologist who treats your Addison's disease should be able to assist you in evaluating any metabolic disorder contributing to the stone forming tendency. There is no direct relationship to the Addison's disease. You need a thorough work-up including routine blood chemistries and 24 hour urine collections for calcium, uric acid, oxalate and citrate. In addition, it is helpful to chemically analyze the stones you passed. This will give your endocrinologist an idea about whether you excrete too much of any of these chemicals and possibly add medications or diet to minimize your risk of another stone. Whatever the chemistry might be, maintain a higher intake of fluids to reduce the crystallization that forms stones.



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

QUESTION: My sister has Addison's disease and wants to know if she should have Shingles vaccine.

ANSWER: There is no contraindication to shingles vaccination in Addisonian patients. Since the risk of getting the infection is no different from the rest of the population, each person should consider the risk of disease versus the benefit.



15) Q&A from the December, 2008 NADF newsletter:

QUESTION: I have had Addison's Disease for 7 years now and my current age is 48 years old. I had a question that my doctor can't answer at this time. Can Addison's patient's take birth control pills? I have two large cysts that have grown on my ovaries and the doctor wants to give me birth control pills to receive balanced hormones? Do you know if birth control pills will affect my health since I have Addison's Disease? OR can I take them without out side affects.

ANSWER: Yes, birth control pills are safe and effective for women with Addison's disease. They do not have any effect on the dosage of glucocorticoid or mineralocorticoid therapy.



16) Q&A from the September, 2009 NADF newsletter:

QUESTION: My wife was diagnosed with Addison's Disease in 1975. She has been cautioned NEVER to donate blood. Her doctor emphatically stated that the amount of blood given in a ‘normal' donation (a pint if memory serves me correctly) could result in her death! While that opinion is just that - an opinion - certainly she will not go against the advice of her doctor. I also realize that her general physical condition is unique, and that such a warning was given with due consideration to the uniqueness of her own condition. My only purpose in writing this is to add a note of caution for any Addisonian considering blood donation.

ANSWER: They (Plasma Services Group) are obviously aware of the Addison's disease diagnosis for any donors. From their website it indicates that they take the plasma by a process called plasmaphoresis. This keeps the red cells in the patient and is therefor safer than taking whole blood. If performed slowly, with adequate hydration and monitoring, it is safe for Addisonians who are well controlled and asymptomatic.



17) Q&A from the December, 2009 NADF newsletter:

QUESTION: You have been helpful in the past while we try to help my Dad. He was diagnosed with Addisons a couple of years ago. They are having a horrible time regulating his blood pressure. It constantly fluctuates from extreme lows to too high. He also suffers from extreme confusion and repetition. They took him for a second opinion and this doctor doesn't think he has Addison's because he does not have any pigment discoloration, but they don't know what it is. My mother is constantly trying to regulate his steroids and BP medicines. She is worn out. I had not seen him since his diagnosis. They arrived for a visit a couple of days ago. I was stunned to see the changes in him. When I got home from work he was totally confused and kept repeating the same story over and over (about 15 times in 30 minutes). This confusion had started around 3pm more so after he took his medicine. He took hydrocortisone, sodium. We sat down to eat dinner and he took his medicine (Multivitamin, Calcium with D, Aggrenox, Vitamin B and Symvastitin). Very shortly after dinner he was fine. He had a normal conversation and was engaged with us. It was the most unbelievable thing. Everyone thinks he has dementia, but dementia doesn't go away after taking medicine. He has days the confusion is worse and might last all day. Are you aware of this type of problem with Addison's patients? Thank you for any input you can provide.

ANSWER: From the pattern of improvement after eating, one must consider hypoglycemia as a cause of the confusion. True dementia would not respond like that. Also, the fluctuating blood pressure suggests an element of essential hypertension which is now complicated by the coexisting (presumptive) Addison's disease. This is a situation where his doctor should arrange for home blood pressure as well as home blood glucose monitoring, to sort out what really happens. It is important to avoid diuretics for the blood pressure. Often a combination of low dose fludrocortisone with a drug like Norvasc can balance the blood pressure. If hypoglycemia is documented, an adjustment of the hydrocortisone regimen and a change in diet would be necessary.



18) Q&A from the December, 2009 NADF newsletter:

QUESTION: A member would like to know if it is typical to lose bone and muscle mass with Addison's. He is 73 and he has told me several times that he has lost all his bones and muscles.

ANSWER: One of the major problems in the treatment of Addison's disease is to balance the necessary replacement steroid dose for good health and well-being against the negative effects of excess steroid use. In excess, glucocorticoid hormones can cause muscle wasting and weakness as well as osteoporosis, or bone thinning which can increase the risk of fracture. Therefore, these effects are not due to the Addison's disease itself, but from the treatment. That is one of the reasons it is important to adjust the steroid dosage to the lowest dose that keeps the patient comfortable and free of adrenal insufficiency symptoms. At the same time, it is vital to maintain good nutrition, with adequate amounts of protein, calcium and vitamin D. When osteoporosis is found, additional treatment with bisphosphonate therapy (Fosamax, Actonel or Boniva) can be useful.



19) Q&A from the December, 2009 NADF newsletter:

QUESTION: Would you please address in a newsletter and at any future medical conferences an issue that physicians need to alert their patients too. I recently had a cholecystectomy. Just prior to the procedure I reminded the anesthesiologist that I couldn't have etomidate due to my adrenal suppression. He made no comment, just looked at me; I could tell by the look on his face that he seemed unaware of the correlation between etomidate and adrenal suppression. A recent article dealing with this topic PubMed abstract J Trauma 2008 Sep:65(3):573-9. Adrenal suppression following a single dose of etomidate for rapid sequence induction: a prospective randomized study. I'm not trying to be a “know it all" I just wanted to wake up alive and educate and/or remind the anesthesologist about etomidate. That night after surgery my BP was 70/50 and the next am 88/53. I don't know if he gave me etomidate or that I just didn't dose myself with enough dexamethasone prior to the procedure and the next day. (P.S. the surgeon didn't know about how much steroid dosing either.) Thanks.

ANSWER: I do not know how often etomidate is actually used as an anesthesia adjunct, but it is well established that it can suppress adrenocortical function and lower cortisol levels for several hours. In fact, it has been used to treat adrenal cancer, but is not very useful longterm because it must be given IV and causes sedation. It is very important to note that it would not affect an Addisonian taking steroids because it suppresses adrenal production, not cortisol metabolism. Therefore, it would not have produced any effect in the person with Addison's disease getting a steroid prep for surgery. It could, however, affect a person with undiagnosed Addison's or a person with borderline secondary adrenal insufficiency who it not given a steroid prep.



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

QUESTION: I don’t know if you can help me find someone who has knowledge or experience with non-classical 21 hydroxylase deficiency and pregnancy. I am an adult endocrinologist and saw a woman with a history of elevated 17 hydroxyprogesterone levels that had been worked up and treated by her previous endocrinologist with decadron. She wants to become pregnant and wants to know if she should stay on or off the dexamethasone. Her first pregnancy ended with an atypical case of fetal demise at 22 weeks with atelosteogenesis. From what I can read, cases of overt classical CAH can deliver normal children without steroids, but some reviews warn that maternal androgens could virilize a female fetus. The woman is concerned that the dexamethasone might have caused the atelosteognesis. I have no experience with this clinical question. Do you have any people with experience I can call or correspond with?

ANSWER: Part A from Dr. Margulies: Although steroid use may be necessary to allow normal ovulation and conception, my own bias is to not treat non-classic CAH with steroids during pregnancy because the risk to the fetus is so small. Others may disagree with this. You could forward this to Dr. Speiser for her perspective. Part B from Dr. Speiser: The first question one must ask is what criteria were used to diagnose non-classic 21-hydroxylase deficiency. Many cases in which a patient is diagnosed elsewhere turn out not to have CAH at all. So, before answering the dex in pregnancy question, that must be clarified, and the ORIGINAL hormonal tests must be obtained. In animal studies, but not in humans, high dose exposure to glucocorticoids during early gestation may act as teratogens. I agree with Dr. Margulies that women with NCAH do not always need treatment to conceive, and once pregnant do not absolutely require prenatal glucocorticoid treatment, unless this same couple has a child with classic CAH. In the latter case, they should be offered genetic counseling and enter a clinical trial for prenatal diagnosis & treatment. Physicians who are inexperienced in this regard should not offer this treatment. See LWPES/ESPE Consensus Statement published in 2002 in J Clin Endocrinol Metab on which I am a co-author.



21) Q&A from the June, 2010 NADF newsletter:

QUESTION: How skewed (or not) are results of cholesterol blood tests due to prednisone? After getting diagnosed, the prednisone increased the combined cholesterol to over 200, something I've lived with for the past ten years. My internist prescribed Crestor, but I read that people with autoimmune disease shouldn't take it. Which statin is better for adrenal patients?

ANSWER: High dose glucocorticoids can increase the blood level of cholesterol, but replacement doses for adrenal insufficiency will not cause this increase. Everyone should have regular check-ups that include testing for cholesterol and the fractions of good and bad cholesterol. If the levels are abnormal, and especially if there are other risk factors for heart disease, treatment with a statin is appropriate. The presence of autoimmune adrenal insufficiency is not a contraindication to using a statin. The specific choice is up to the treating doctor and the patient. Factors may include cost and any history of side effects.



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

QUESTION: While researching information for a new flyer an NADF volunteer was working on, she found information on Wikipedia that Addisonians may have raised calcium levels in blood. Have you heard about it?

ANSWER: Hypercalcemia can occur in Addison’s disease and I do see it frequently in my patients. It is generally mild and asymptomatic. I see it most often at times of stress when there is a relative insufficiency of hydrocortisone and may accompany mild hyperkalemia (high potassium). If it persists when adrenal replacement is in balance, it is a good idea to check parathyroid hormone just rule out hyperparathyroidism as a cause of the elevated calcium.



23) Q&A from the June, 2011 NADF newsletter:

QUESTION: I would like info on shingles and addisons disease. I have heard different views on taking the shingles vaccine. I have heard from physican that since I take steroids (hydrocortisone), that I should not take the shingles vaccine. Other doctors felt taking the vaccine was fine, but did not say why or why not. I have also called a local hospital (one of U.S. News and World Report's top 10) regarding this. Their view was a resounding no. I would like the current feeling on shingles vaccine for Addison's disease patients...the whys and why nots. I do not want to make a mistake. I will wait your answer. Thank you.

ANSWER: I am neutral on advising people to get the shingles vaccination. There is no reason an Addisonian should have any reaction to the vaccination, or have any problem getting the full benefit. The use of replacement steroids does not prevent its use. The basic issue is the likelihood of getting shingles versus the expense of getting the shot. Anyone who is fearful of shingles or wants to have the vaccination should go ahead and get it. This is in contrast to influenza immunization, where I strongly favor universal use of the shots because the benefit is very high and the cost is minimal.



24) Q&A from the June, 2011 NADF newsletter:

QUESTION: I was diagnosed with secondary adrenal insufficiency in Dec. of 1992 and have done very well on the hydrocortisone. My usual dosage is 20 mg in the AM and 10 mg in the PM. I am also hypopit and take 100 mcg of levoxyl daily. This was all due to removal of a pituitary microandemona in July of 1981 through an infertility workup. Fast forward to last Nov. when I was diagnosed with stage 4 lung cancer (and never smoked). I have been given 14 whole brain radiations and one radio surgery to the brain. It has spread to the brain and liver. I was on Tarceva for a little over a month, but had steadily felt weakened, wobbly legs, almost passed out 2 or 3 times, (actually I did pass out once but then realized I also had a bladder infection), short of breath, etc. I was taken off Tarceva a week ago and feel better, but also saw my endocrinologist last Friday & I was taking too much thyroid, thus the reduction to 100 mcg every day (it used to be 4 days a week at that level & 3 days at 112 mcg). My endocrine doc has never treated a cancer patient and we trying to find the best dosage for the hydrocortisone. Do you have any thoughts on this? I know it is complicated and you have never met me, but I would appreciate your input. Thank you for all you do for NADF.

ANSWER: Although I cannot give specific recommendations about your care, I can suggest that you and your endocrinologist try to adjust the hydrocortisone dose according to your symptoms, just as you did before the cancer. This can be tricky, however, because the Tarceva itself can cause symptoms that resemble adrenal insufficiency, including fatigue, nausea, weakness and diarrhea. Since these symptoms can respond to additional doses of hydrocortisone, be aggressive about using it, raising the dose by 10 or 20 mg as needed. One other resource you have is the oncologist. Although your endocrinologist may not have experience with cancer, your oncologist does have experience with steroids, so communicate with both doctors.



25) Q&A from the June, 2011 NADF newsletter:

QUESTION: Late December, 2010, he (her son) suffered a heart attack that came pretty close to claiming his life. He underwent surgery and has been progressing well ever since. The obstacles we are trying to overcome is the interaction between his medications, which his cardiologist and his Addison's doctors are working on, and his diet. The no-salt for the heart and the salt for the Addison's is proving to be a challenge. I was wondering if your organization has any information for this type of situation that could aid in his recovering and return some 'normalcy' to this life. Any information you can provide would be helpful. Thank you in advance for your work in this field and for the information you already provide. Sincerely.

ANSWER: The balance between the need for salt or salt retaining medication (such as fludrocortisone) and the abnormal salt and fluid retention that can occur with congestive heart failure or essential hypertension can be difficult. There are no absolute formulas here. The most important thing for the endocrinologist and cardiologist to do is to look at what is happening to the patient. Although normally an Addisonian will need fludrocortisone to maintain fluid volume and prevent potassium retention, if the heart is not pumping normally, this medication might be excessive in normal doses or may be harmful even in small doses. The goal of therapy is to maintain normal blood pressure, normal sodium and potassium levels, avoid fluid overload, but also avoid hypotension and other signs of adrenal insufficiency. One very useful test is plasma renin, which will be elevated in Addisonians on inadequate salt and fludrocortisone intake, but if suppressed would confirm that the patient is fluid overloaded and needs less salt and fludrocortisone.



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

QUESTION: I have adrenal insufficiency, diagnosed about 5 years ago. I always have a problem with doctors & health care professionals not knowing much about this disease & especially not knowing the protocols for adrenal insufficient patients when running tests and procedures. My Gastro doctor has ordered a Gastrografin Enema for me. I don’t know much about this test. I have asked the radiologist questions, but he really can't help me in finding out if I will need any kind of hydration or steroids during this test. Can you help me out? Are you aware of any protocol that needs to be followed for this test, for me?

ANSWER: An enema to look at the colon is not a very significant stress. I would expect that you might need to be on a liquid diet for a day, but as long as you are well hydrated at the time of the procedure, it is unlikely that extra IV fluids or steroids would be needed. However, if you are dealing with any pain or serious discomfort, a slight increase in oral hydrocortisone before the procedure would be safe.



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

QUESTION: A member is wondering what is recommended for high anxiety in patients with Addisons. She is on Clonazepam and it works well for her, but she is afraid of long term addiction. She has heard that herbs such as Holy Basil help, but doesn’t want to try herbs unless there is documentation of herbs helping Addison's patients.

ANSWER: I am not in favor of using over-the-counter herbal therapies for anxiety or any other problems. These therapies are not regulated by the FDA. Their origins, purity, safety and efficacy have not been established for anyone, let alone someone with a specific condition like Addison’s disease. Avoid them, but speak to your own doctor about management of the anxiety symptoms. Psychotherapy, behavior modification and some prescription drugs can be used safely and under supervision.



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

QUESTION: Several years ago my doctor prescribed a statin drug to bring down my cholesterol. I started with Simvastatin that caused instant muscle and joint soreness. My doctor switched me to Pravastatin, 20 mg, which seemed to work for about a year. Eventually my joints and muscles gradually became so sore that I had difficulty moving my legs and arms and it got progressively worse. I stopped taking the statin about three months ago, on my own, and have improved 90%. As an alternative, I am taking two fish oil cap’s per day on my own. I will make an appointment with my doctor (endo) soon for a blood test and routine physical and discuss the statin side effects with him. I have discovered many other people with similar problems with statins through my research on the internet. Do you have any knowledge of side effects of statins on Addisonians?

ANSWER: The muscle cramps from statins are quite common and have nothing to do with Addisons’s disease. I see this frequently in all patients, with no increase in incidence in people with adrenal insufficiency. It is appropriate to try other statins, as you have done. The adjunct use of coenzyme Q-10 has been advocated for several years for those people who do develop muscle symptoms. In my experience it works some of the time, but not always. It seems very safe, so there is no reason not to try it. As far as fish oil versus statins, they are not equivalent. Statins are used primarily to reduce elevated LDL, the bad cholesterol. Fish oil does not do this. It can be useful for people with elevated triglycerides and low HDL, the good cholesterol. Fish oil lowers triglycerides while raising HDL. It is commonly used in conjunction with statins when both effects are desired. But if high LDL is a real issue as a risk factor for vascular disease, fish oil alone will not be adequate.



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

QUESTION: Are you still finding in 2011 that the shingles vaccine is safe for people with Addisons disease? Have you found that such patients always suffer side effects from it, for example you can always expect to have a fever or headache from it? As I live alone then I need to be prepared. I know a friend who is suffering severe nerve damage from having shingles, but I am still hesitating on whether to be vaccinated or not!

ANSWER: No. I am not aware of any increased incidence of side effects from the shingles vaccination in Addison’s patients.



30) Q&A from the March, 2012 NADF newsletter:

QUESTION: I am a provider with an Addison’s patient. She has been doing well on the Hydrocortisone 10mg three tablets daily when she developed hot flashes, mood swings and night sweats. We placed her on a low dose Combipatch and this has alleviated her symptoms however has caused her to blow up secondary to the potentiation of the estrogen on the Hydrocortisone, so we are reducing her Hydrocortisone and expect this edema to resolve. My questions: 1 Do we have more cases of Addison’s then are recognized, as they may present with menopause symptoms and in giving these women HRT, we are increasing the endogenous cortisol levels, thus masking a diagnosis of Addison’s? 2 Would repeating the cortisol levels now, with having a baseline, help us to make adjustments to her current dose of steroids?

ANSWER: Estrogen does not increase the production of cortisol, it only increases the level of cortisol binding globulin, making the serum cortisol level appear higher. I do not think we are missing patients with adrenal insufficiency. Adding estrogen to a woman with adrenal insufficiency will not relieve the symptoms of adrenal insufficiency, only the vasomotor symptoms. Adjusting for any fluid retention might necessitate a decreased dose of mineralocorticoid, not the glucocorticoid.



31) Q&A from the March, 2012 NADF newsletter:

QUESTION: Can you give us some information on the interaction between prednisone (as well as other corticosteroids) and calcium (acid neutralizing agents)?How much AI patients be concerned?

ANSWER: The interaction of glucocorticoids and calcium has several facets. Many people take calcium antacids with their steroids because they think they need it to reduce the incidence of heartburn from the steroids. In fact, that is rarely needed. Glucocorticoids are known to cause calcium loss leading to osteoporosis, but research has shown that the replacement doses used to treat Addison’s disease do not increase that risk. I do recommend calcium supplements for postmenopausal Addisonian women, but the dose is the same as other women. Vitamin D is important to assess in all postmenopausal women, and vitamin D supplementation to achieve blood levels above 30 is important. High doses of glucocorticoids may suppress vitamin D levels as well as activity, but normal replacement doses should not effect vitamin D.



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

QUESTION: How quickly can an adrenal insufficient patient die from adrenal crisis?

ANSWER: No good answer to the question. Death in the setting of an adrenal crisis depends on what is going on in the patient, not just the absence of adrenal function. Most deaths in adrenal crisis occur because there is shock related to an infection or loss of blood volume because of an accident or injury. Hypoglycemia may also occur and contribute to loss of consciousness, as can arrhythmias from high potassium and low sodium levels. The rate of change in a person’s function ending in death depends on how fast any of these factors are progressing, the underlying health of the individual, and the ability of heath providers to reverse them.



33) Q&A from the March, 2013 NADF newsletter:

QUESTION: I read in an article that healthcare workers do not realize the urgency in treating an acute adrenal crisis, of fail to heed the requests of patients and family for hydrocortisone during a crisis. How do you recommend patients, and the caregivers of patients, communicate the urgency of an Addisonian crisis to healthcare professionals? Do you think it is better to use the phrase, "chronic adrenal insufficiency," or, "Addison's disease," when talking to healthcare workers and requesting steroid administration?

ANSWER: This is one of the main goals of NADF. We try to provide education to patients, families and health care workers. I suggest that when a patient with Addison's disease goes to an emergency facility with an acute adrenal crisis that they immediately tell the triage person that they have an Addison's disease crisis, show them the NADF or similar card with instructions, and direct them to immediately give IV saline and IV hydrocortisone. If there is any delay, start making demands to see a supervisor or head of the ER.



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

QUESTION: I don’t seem to be absorbing my oral dose of hydrocortisone well. At a high dose I seem to be ok, but when I taper back to a more normal dose, my levels are too low. My doctor is switching me to dexamethasone, but says there is nothing they can do if I have the same problem with it. What can I do?

ANSWER: I have a patient who has the same phenomenon. Basically, you need to take higher than average doses. The dosage can be adjusted to the point where signs, symptoms and blood studies are normal, even though the total dose may seem very high (compared to other people). Trying another oral steroid is OK too. I would suggest prednisone (plus fludrocortisone) or medrol rather than dexamethasone because of the shorter duration of action.



35) Q&A from the March, 2014 NADF newsletter:

QUESTION: I have adrenal insufficiency as well as numerous other medical conditions. I experience chronic pain because of those conditions, and have been taking opiates for years to manage it. Due to a problem with supplying my pain medication, I have been approached with the idea of using naltrexone to try and quickly break my dependency on opiates. There is not yet a plan for a replacement method to treat my pain. What is your opinion of using naltrexone therapy as an adrenal insufficient patient?

ANSWER: Using naltrexone is certain to cause severe pain. It is very important to manage the use of any narcotic with adrenal insufficiency. Narcotics can increase metabolism of glucocorticoids, and not enough of either pain medication or cortisol can further increase pain. Finding a balance is difficult, requiring frequent adjustments to dosages of pain medication and steroids. However, I cannot recommend using naltrexone if the opiates you are on are necessary to fight chronic pain. Naltrexone is usually only used for overcoming narcotic addiction, and it sounds like you need pain management. Without pain management, naltrexone will only further complicate your adrenal insufficiency since pain is a severe stress.



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

QUESTION: I am a nurse, with a patient who has an allergy to hydrocortisone, but can tolerate prednisone. Because of their allergy, I am worried about giving them a prescription for hydrocortisone for an emergency injection. Are there alternative preparations for an emergency injection?

ANSWER: There are two non-hydrocortisone preparations available for injection: methylprednisolone (Solu-Medrol) and dexamethasone. These glucocorticoids have very little mineralocorticoid activity (especially dexamethasone), so it is not the same as giving IM hydrocortisone in an emergency. I would suggest a thorough evaluation of the "allergy" to hydrocortisone, since it is quite rare.



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

QUESTION: Colonoscopies can be a terror to many. Dehydration and nausea are big factors, and prevents many from going through with them. I’m very concerned about the effects of both the preparation and procedure causing someone with adrenal insufficiency to go into crisis. What sort of precautions can patients take to help them?

ANSWER: The cleanout protocols have changed and are now gentler. There is no need for inpatient colonoscopy unless there are other significant medical problems, like severe heart disease or a history of complications from previous colonoscopies. As always, I recommend individualization of steroid management, so if the prep causes nausea or severe cramps, extra hydrocortisone should be used to cover those symptoms on the prep day. However, if the cleanout just causes the usual diarrhea, and appropriate fluids are used to avoid dehydration, a normal steroid dose that day will be sufficient. My recommendation for a slight extra dose on the morning of the procedure stands, although even that is probably not needed in most cases. But again, a higher dose can be used if there are other stressors. I continue to recommend that the anesthesiologist be prepared to give IV hydrocortisone if needed.



38) Q&A from the September, 2015 NADF newsletter:

QUESTION: I am aware of recommended surgery protocol for adrenal insufficient patients. Are there recommendations for the 2nd and 3rd day post-surgical, bilateral knee replacement therapy as one begins ambulation?

ANSWER: The speed of steroid taper post-op depends on the severity of the post-op stress, which usually means pain. After knee replacement, narcotics are typically used, and these affect the steroid dosage indirectly. It would be common to need a double oral dosage for the first 2 or 3 days post-op. If pain is well controlled, a taper to 1 and 1/2 of the usual oral dose may be needed for several more days until pain is limited. If there are any surgical complications, such as infection, a return to higher stress doses would be needed. When in doubt, if any adrenal insufficiency symptoms occur, such as nausea or dizziness, continue to take extra glucocorticoids.



39) Q&A from the September, 2016 NADF newsletter:

QUESTION: Do you have any guidance for the use of melatonin, as an Addison’s disease patient?

ANSWER: Melatonin is safe in Addison’s disease. Not everyone responds, and it usually takes 2 or 3 days for it to work, but I recommend it as a safe sleeping aid.



40) Q&A from the September, 2016 NADF newsletter:

QUESTION: What is your medication guidance regarding wisdom teeth extractions for AI patients?

ANSWER: Steroid coverage for wisdom teeth extraction depends on the type of anesthesia being used and the expected degree of post-op pain. If general anesthesia is needed, I would suggest IV hydrocortisone 50 mg to be given at the time of anesthesia. If local anesthesia is used, oral hydrocortisone 20 mg before the procedure should be sufficient. Post-op, extra oral hydrocortisone of 10 to 20 mg can be added a few hours later, depending on the severity of pain.



41) Q&A from the March, 2017 NADF newsletter:

QUESTION: Are there studies in Addison’s disease patients who anticipate need for Kidney disease dialysis? I am 84 years old. I was diagnosed with Addison’s disease 36 years ago. I am now at stage 3 CKD… Nephrologist wants me to “investigate dialysis” for possible future needs. I have to continually adjust my needs for electrolytes. Wouldn’t that increase my needs for extreme monitoring in dialysis?

ANSWER: Dialysis in persons with Addison’s disease is a challenge, but it can be done. The fluid shifts and electrolyte balances can be dealt with by experienced nephrologists. Generally, the hydrocortisone dosage would remain stable, but fludrocortisone would no longer be useful because it works on the kidneys.



42) Q&A from the March, 2017 NADF newsletter:

QUESTION: Are there any new appetite suppressants that are safe for adrenal insufficient patients?

ANSWER: I do not support the use of appetite suppressants for anyone, whether they have adrenal insufficiency or not. Despite the approval of some of these medications by the FDA, I am not impressed with the long term benefit of any of them. Among the otherwise healthy obese, most regain the weight they lost while on these drugs within the next 6 to 12 months. Short term, these drugs are generally stimulants that may cause irritability, sleep disturbance and gastrointestinal symptoms. I support the use of portion control diets along with exercise.



43) Q&A from the March, 2017 NADF newsletter:

QUESTION: I know that people with adrenal insufficiency are prone to hypoglycemia, before diagnosis or when under-medicated. Have you ever had a patient whose hypoglycemia actually caused them to crave sugar?

ANSWER: If a person who tends to have hypoglycemia learns that taking sugar relieves the symptoms, they may develop the habit of craving sugar when they get those symptoms again. This can be true with any cause of hypoglycemia. Many people have “reactive hypoglycemia” where symptoms occur 2 hours after eating carbohydrate. Often the glucose level is actually normal, but feels low because it is dropping after the robust insulin response to the carbohydrate. It turns out that preventing the symptoms by eating a protein snack is better that responding to the symptoms with sugar. In any case, whether in adrenal insufficiency, diabetes, or reactive hypoglycemia, sugar should be used only as last resort. A balanced diet is best.



44) Q&A from the September, 2017 NADF newsletter:

QUESTION: I’m traveling to Zika infested countries soon. Any special considerations for adrenal insufficiency patients?

ANSWER: Zika virus infection presents no special risk to people with adrenal insufficiency. Most get a mild brief illness, or no symptoms at all. The real issue is pregnancy. Pregnant women, those trying to conceive, and men who might contribute to a conception within the next 6 months should avoid areas of infestation.



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

QUESTION: Q.I was diagnosed with Addison’s disease recently after I had a seizure from hypotension. I am a urologic surgeon and am supposed to return to work. I am worried that the stress of my job (which is unpredictable and variable) will be difficult to manage. I take call regularly and cover 3 hospitals simultaneously while doing so often as long as 7 days straight or more. I worry that the periodic confusion that I experience now (i.e. I walked out of a store and forgot to pay) may limit my ability to always be correct as my job requires. I am wondering if there are other surgeons with the disorder who can confirm that they have been able to continue to work as I do now. I have to worry about not only the lives of my patients but also my life as I am only 40 years old. Any resources that you can help me with would be greatly appreciated. I am even stressed thinking about work right now.

ANSWER: I certainly understand your concern. I do not have any surgeons with Addison’s disease in my practice at this time, although I do have an emergency room physician who performs very well at his job, plus a few nurses and medical technicians. I think the major challenge you face is the unpredictability of the hours and work stress. You are going to have to learn how to monitor your stress to develop a pattern of glucocorticoid therapy that works for you. Start with “normal” days with normal hours of work, allowing normal meal breaks and rest, and find a dosage of glucocorticoids and mineralocorticoids that keeps you comfortable. Then, by trial and error, find the amount of extra hydrocortisone that you need to add for specific types of extra stresses, such as a prolonged surgery or excessive physical exertion, or later than normal hours. Always carry extra hydrocortisone tablets with you. You will gradually learn how to offset each type of stress with a specific extra dose. It will take time, but it can be done. Don’t give up on your career!



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

QUESTION: How does pregnenolone affects those with AI? I ran into some interesting information by accident while researching something unrelated on this hormone, and while it appears it may be the same 17-OH that’s run to check for CAH and I can see its place in the HPA axis, it also appears to be something that may be low in pretty much all of us with AI. When I looked into what could be done about it, the treatments were controversial at best and for the most part not recommended. Is low pregnenolone a problem for adrenal insufficient patients?

ANSWER: Unfortunately, pregnenolone has been the subject of much hype in the alternative medicine world, leading to a lot of confusion. It is a steroid made from cholesterol and is a precursor to other steroid hormones including androgens. It is made in the adrenal gland, but also in the gonads and in the brain, where it acts as a neurosteroid, protecting certain neuronal function. In Addison’s disease the adrenals are destroyed, so the adrenal production of pregnenolone is gone. However, the gonadal and brain production are intact. Oral supplements of pregnenolone have been available for many years. They have been promoted as beneficial for all sorts of things, including energy, anti-aging, anti-dementia and improved sexual function. There is no good science proving any benefit at all. It obviously cannot help people with Addison’s disease because there are no adrenal glands. Since we replace cortisol for the Addison’s, there is no need to consider pregnenolone in managing adrenal insufficiency.



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

QUESTION: I had a bilateral adrenalectomy in 2015 following a MEN2a and bilateral pheochromocytoma diagnosis. My current endocrinologist agreed to let me try using a continuous subcutaneous hydrocortisone infusion (CSHI) pump to see if it improves my quality of life and overall health and I started using it about a month ago. My doctor isn’t sure of the value of cortisol blood testing to determine optimal basal rates for my pump, but I want to use the results to ensure that I’m not having under or over-replacement. I have some research, specifically from the U.K., which supports testing but my doctor isn’t even sure what tests to order, how to do the testing, or which tests to run. I wondered if Dr. Margulies has any advice or thoughts on using cortisol blood tests to determine absorption and clearance rates to tailor dosing (oral or via a pump) and why it’s not something endocrinologists in the United States seem open to discussing. Can he respond with his thoughts on either a 24 hour cortisol profile or day curve analysis?

ANSWER: I have no experience with the pump management of adrenal insufficiency or CAH. I always refer people to the UK group. I suggest that the endocrinologist communicate with the UK group for advice. The reason there is no US data is no one has set up a clinic with the expensive infrastructure necessary to have a pump program here. It is impossible for a private practice to have the backup resources to maintain several patients on the pump.



48) Q&A from the September, 2019 NADF newsletter:

QUESTION: A doctor recently told me that some adrenal patients are being treated with inhaled steroids. QVAR has worked fantastic for me, but I’m taking it for asthma rather than my low adrenal output. Any chance you can point me to a study on this? Most that I’ve seen worry about inhaled steroids suppressing adrenal function.

ANSWER: I am not certain what your doctor had in mind. Inhaled steroids are only used to treat pulmonary diseases. There is no inhaled steroid treatment designed to manage adrenal insufficiency.



49) Q&A from the December, 2019 NADF newsletter:

QUESTION: My husband was recently hospitalized and the staff physician suspected pheochromocytoma. After reading extensively, all of his symptoms concur with the hospital’s diagnosis. We followed up with our family doctor, and he has recommended a nephrologist. I have not read anywhere that our next step would be to see a nephrologist. Is there any guidance you might advise at this time?

ANSWER: Although an endocrinologist would usually be the specialist to confirm the diagnosis and manage the patient with medication and coordinate surgery, some nephrologists have experience with this disease. In any specific medical community, there may be a nephrologist with more experience than any local endocrinologist. The key is experience.



50) Q&A from the March, 2020 NADF newsletter:

QUESTION: I was diagnosed with Addison’s disease in 1988. I was wondering if anyone has tried CBD (cannabidiol) products to help with tiredness, joint pain, and muscle aches. If so, does it help, and are there any downsides to it? Thanks for any info you can give.

ANSWER: CBD products are now available without prescription because they contain no THC, the active cannabinoid in marijuana. Unfortunately, since the products are over the counter, manufacturers and distributers can make claims about benefits and purity that are unsubstantiated. We need controlled studies and better verification on the potency of these products. I am not an expert in the use of CBD oil or other products, but some of my patients without adrenal disease have reported short term help with anxiety and stress with the oil. I have no experience with CBD in Addison’s disease. I would express caution until there is more research and more consistency in the available products.



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

QUESTION: I was put on a high dose of hydrocortisone due to a serious illness that led to hospitalization. Do you have any advice to taper down after two days of high doses (7 doses of 100 mg, every 6 hours)? My endocrinologist put me on a 10-day regiment to taper down. Is that needed?

ANSWER: The rate of taper is based on the clinical status of the patient, not the diagnosis of adrenal insufficiency. A slow taper of 10 days would be appropriate if you are still ill and need continued stress dosing of the hydrocortisone. If you are completely back to normal and have good blood pressure, and are able to eat normally, then a more rapid taper would be appropriate.



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

QUESTION: I read a study about increased renin levels in Addison’s disease causing a higher mortality rate due to cardiovascular disease. I take 0.5 mg fludrocortisone daily, and my renin levels are over 1000. My sodium and potassium levels are always normal. Can you please tell me if you are familiar with this study, what it means, and if you feel I am taking the appropriate dose of fludrocortisone given my high renin levels, but normal sodium and potassium?

ANSWER: Elevated renin in Addison’s disease reflects diminished blood volume from a deficiency of mineralocorticoids. Usually potassium will also be elevated in this situation, but not always. The most important symptom related to low blood volume is postural hypotension with resulting dizziness and salt craving. The elevated renin itself should not cause an increase in cardiovascular disease, but hypotension is a risk. A dose of 0.5 mg of fludrocortisone is a higher than average dose, suggesting some degree of mineralocorticoid resistance. It is rare, but I have been treating a patient who needs 4 times that dose. I would focus on sense of wellbeing and a lack of adrenal insufficiency symptoms with appropriate hydrocortisone replacement in addition to a dose of fludrocortisone that optimizes blood pressure.



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

QUESTION: Should individuals with adrenal insufficiency stress dose prior to receiving the COVID-19 vaccine?

ANSWER: I do not advise using extra glucocorticoids on the day before or on the day of vaccination. I suggest the individual with adrenal insufficiency wait to see if significant side effects occur, usually the day after the vaccine. If there is fever, significant muscle aches and pains, and especially nausea or any typical adrenal insufficiency symptoms, I would then add stress dose steroids in addition to treating any fever with acetaminophen or ibuprofen. I have spoken to many of my patients about their experiences, and many report no side effects at all. Those that did have significant symptoms were individuals who had a history of acute Covid-19 infection earlier in the year, and then had the vaccine.



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

QUESTION: I’d like to start taking the minerals zinc and selenium daily; is this something that will disrupt my hydrocortisone or effect my Addison’s Disease? If not, how much is appropriate?

ANSWER: Neither zinc nor selenium will have any effect on Addison’s disease management. I do not specifically recommend either, but if you want to take them, there is no harm. Zinc is being promoted for anti-viral properties, but the benefit is minor. Selenium is promoted for autoimmune thyroid disease. I don’t propose its use to patients because the studies showing a benefit were in people who lived in parts of the world with a deficiency of selenium. In the US, there really is no such deficiency.



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

QUESTION: I was recently diagnosed with an adenoma. Who is the best kind of specialist to see for adenomas?

ANSWER: Adrenal adenomas are quite common. The patient should be evaluated by an endocrinologist for adrenal function to determine if the adenoma is producing excess cortisol or any other adrenal hormone. The next issue is size and growth. Regardless of function, if the adenoma is bigger than 3.5 cm or is growing, surgical excision should be considered.



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

QUESTION: How does the endocrinologist know how much fludrocortisone to start an Addison’s patient on when diagnosed? What tests and/or symptoms does the doctor and patient monitor over time to determine if different dosing needed? Is there any time that a patient would need to take more fludrocortisone for a singular event (e.g., sweating more)?​

ANSWER: Fludrocortisone is the medication that replaces the hormone aldosterone, the mineralocorticoid hormone. This hormone tells the kidneys to absorb sodium and excrete potassium. This helps to maintain blood volume and blood pressure. In untreated Addison’s disease, the body loses sodium and retains potassium, so blood pressure tends to be low, contributing to lightheadedness and fainting. In prescribing fludrocortisone, the endocrinologist will often start with an average dose of 0.1 mg per day and then adjust from there. Adjustments are based on clinical response, including blood pressure, drop in blood pressure on standing, symptoms like lightheadedness, and laboratory tests like serum potassium, sodium and BUN. One of the most useful tests of adequacy of fludrocortisone dosing is the plasma renin. This measures the kidney response to blood volume. If it is high, more fludrocortisone is needed. If it is low, and blood pressure is elevated, it would be appropriate to lower the dose. Keep in mind that there is also some mineralocorticoid activity in the hydrocortisone. Fludrocortisone has a long duration of action in the body, so sometimes low doses like 1/2 tablet every 2 or 3 days can be used. With that long duration and slow metabolism, it is not useful to add more for acute events or illnesses. It is better to add more hydrocortisone, salt and fluids for acute events that may include sweating and fluid loss.



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

QUESTION: Can Addison’s disease cause neuropathy? Like in your hands and feet?​

ANSWER: Answer: Addison’s disease does not cause neuropathy. However, there are two rare diseases of the nervous system that are associated with Addison’s disease. They are caused by an inherited enzyme disorder that causes injury to the nerves in the brain and spinal cord. When it presents in infancy, it is called adrenoleukodystrophy. If it occurs in an adult, it is milder and is called adrenomyeloneuropathy.



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

QUESTION: It appears to me that my daughter stays sicker longer with colds and that kind of thing. Is it true that Addison’s patients’ take longer to recover from common colds and the like?

ANSWER: We know from recent studies that people with Addison’s disease have an increased susceptibility to viral infections because of the effect of maintenance glucocorticoids on the immune mechanism that fights viral infections. However, there is no literature on the duration of viral symptoms. I suspect this is an individual phenomenon. From talking to my patients who do not have adrenal disease, I find a lot of variability in their response to viral infections. Remember that those with Addison’s should add extra hydrocortisone when they do have an infection and maintain the extra dose until they feel better. This can reduce the severity of symptoms.



59) 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.



60) 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.​



61) 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.





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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