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Found 75 matches in 58 Q&A's.


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

QUESTION: I have Addison's disease and will traveling extensively overseas next year (perhaps as long as a year). Would it make better sense to buy all my medications before leaving (with the risk of loss of luggage) or buy it in smaller amounts as I travel? Can I trust overseas pharmacies?

ANSWER: It would be easier for you if you buy all, or as much as you can, of your medications before you leave the United States, while keeping enough medications on your person to tide you over until replacements can be acquired, in case of luggage delay or loss. Please carry your emergency cortisol injection with you on flights, as well as a letter from your endocrinologist stating that you need to carry it, in case questions are raised. We also recommend you carry a copy of our Emergency Treatment Instruction Sheet with you at all times, in case of need. Travel safely, and bon voyage.



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

QUESTION: endocrinologists who specialize in diabetes who are called diabetologists and those who specialize in the thyroid who are called thyroidologists? Are there adrenalologists?

ANSWER: No one calls themselves an adrenologist. Maybe I should start.



3) 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.



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

QUESTION: I have a question regarding possible interference of methotrexate with Cortef. I was put on methotrexate (7.5 mg once a week) for rheumatoid arthritis about early October. It didn't help; in fact I began to feel worse, but we were finishing a new house, moving in, etc. and I attributed this to stress. Early December the dosage was increased to 10 mg per week. I began to feel REALLY HORRIBLE. Weak, upset stomach, weepy—it's hard to describe how awful I felt. My normal dose of Cortef was 25-30 mg per day (10- 10-5). I had gone to 60 mg per day and it didn't seem to help. I started going through my files regarding Addison's and came across a short blurb about drug interference with cortisone. I discussed it with my PCP (not an endocrinologist as none are available in this area). We decided to drop the methotrexate about mid- December. I began to feel better as of early February. I am wondering if the methotrexate is indeed the culprit, how long it should take to get this out of my system and if there is something I could take in place of it. I would prefer not taking anything at this time if I can avoid it. Too many pills.

ANSWER: I am not aware of any interference in cortisone metabolism from methotrexate. The fact that increasing the hydrocortisone dosage didn't help suggests that it was not the adrenal insufficiency that made you feel bad, it was the methotrexate. Many people can't tolerate it. I am not able to suggest other treatment for the RA. You need a rheumatologist to review your condition and your previous drug effects.



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

QUESTION: endocrinologists who specialize in diabetes who are called diabetologists and those who specialize in the thyroid who are called thyroidologists? Are there adrenalologists?

ANSWER: No one calls themselves an adrenologist. Maybe I should start.



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

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

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



7) 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.



8) 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.



9) 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.



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

QUESTION: I am a 54 year old female who was diagnosed with Addison's Disease five years ago. For a long time, I have wanted to try one of the dermal fillers for the deep folds around my mouth. Is there one that is safe and effective for me to use? I have asked my endocrinologist, but he is not familiar with the products. I have an appointment with my dermatologist next month to have some keratoses removed. I would like to talk with him about the fillers at that time.

ANSWER: I am not familiar with these products either. I can't think of any reason you would not be able to use a skin therapy that is safe and effective for other people. As long as it does not cause any serious stress on your body, the Addison's disease should not be a factor.



11) 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.



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

QUESTION: I am a veterinarian who was diagnosed with hyperaldosteronism 2 years ago. I am not responding well to a variety of medications for my hypertension. I have had a CT of my adrenals (which was normal) and now am considering pursuing adrenal vein sampling. Can you advise who in the US has the most expertise for performing this test? Any help would be much appreciated! Thank you.

ANSWER: Adrenal vein sampling is available at most large academic medical centers. I do not have specific names available, but you might try calling UCSF in San Francisco, or Cedars-Sinai in LA and speak with endocrinologists at those institutions about their experience.



13) Q&A from the June, 2009 NADF newsletter:

QUESTION: I am a member of NADF because I've had Addison's for the last 7 years and I am hoping you can help me because I have not gotten a reply from my endocrinologist. I will be having an angiogram and I need to know how to prepare for this. Is there anything special that my cardiologist needs to do before doing the angiogram? Thank you for your prompt reply and assistance on this matter.

ANSWER: An angiogram is not as stressful as surgery, so IV Hydrocortisone is usually not needed. I would still suggest contacting your own endocrinologist, but I can recommend taking a double dose of your usual morning hydrocortisone before going for the angiogram. Remind the cardiologist about your condition and have him contact your endocrinologist if there are any postprocedure issues that might necessitate giving you extra doses of hydrocortisone.



14) 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.



15) 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.



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

QUESTION: I have been diagnosed with pheochromocytoma. Unfortunately, the I-123 MIBG that was performed at Mass General Hospital did not locate the tumor. My endocrinologist wants to wait for three months to re-test. My question is are there any other options? My BP has been all over the chart and now is relatively normal. The doctor thinks that the tumor is inactive at this point and that I should wait until the pressure is back up to the 200 level. This idea is very frightening to me because of the risks of stroke and heart attack involved. Are there any other courses of action rather than waiting for this to re-activate? Do you have any suggestions? This is a very frightening thing to deal with and I guess I am just searching for support or information. Thank you.

ANSWER: Most pheos are localized on MRI. If the MRI is negative and the MIBG scan does not localize it, there is no opportunity to operate. However, that does not mean that the condition should be ignored. If laboratory studies have confirmed an excess of catecholamines or their metabolites, medication should be used to control the blood pressure and pulse. The medications may include alpha blockers, beta blockers, and sometimes other blood pressure medications. As long as the blood pressure and pulse are OK, it doesn’t matter how long it takes to localize the tumor.



17) 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.



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

QUESTION: In January 2010 I had surgery for Lichen Sclerosus (autoimmune). I was increased on my high potency topical steroids for about 3 months prior to surgery, then told I needed to stop after surgery to heal. I crashed. 3 different specialist have said in conversation (not diagnosis) that I have Addisons disease, after telling what happened. I have felt this is true since 2006 after a different surgery. Since I cannot seem to get referred to an endocrinologist, I have used Dessicated Adrenal for 2 years now. I had also tried stopping the dessicated adrenal when they told me no steroids after the surgery. That also contributed to my crashing (severe muscle weakness, salt cravings, extreme fatigue, vomiting, confusion). My question is, does anyone know if this supplement can give false normal cortisol levels, as it has some steroidal effects. I do know I cannot function without it. I am afraid when I finally have my endo appointment in Feb. that my levels may be false normals, and I will not get proper treatment. I also take Rehmannia periodically, as it has an immune suppressing activity to it. Thank you.

ANSWER: Over the counter dessicated adrenal extract is unregulated. The FDA has inadequate resources to monitor ingredients. It is not legally allowed to have any significant hormonal activity, but who knows? I do not recommend it for anyone at anytime.



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

QUESTION: I am very concerned about my forty year old granddaughter - she appears to be following in my footsteps healthwise. At age 39, after gaining from 135# to 190#, I was diagnosed with Cushing’s Syndrome. I had a bilateral adrenalectomy. I did quite well for three years, then the symptoms reappeared and I gained all the weight back, plus the widow’s hump. I was sent to an endocrinologist & after three months they said I had more adrenal glands growing in my body. I was so weak I couldn’t even shake hands. The doctor suppressed the glands where ever they were, and I’m now regulated on 20 mg am and 5 mg pm. I’m still weak and walk with a walker. My granddaughter has all the symptoms - even fell down a flight of stairs while holding on to the rail, as I did many years ago. She told her GP who ran a 24 hr. urine & and I don’t know what other lab work. My granddaughter has gained up to 200 lbs - mostly face and trunk of the body. Legs & arms are thin. She also broke her shoulder of the arm when she was trying to break her fall. I do not want to interfere but I’m very concerned. I hope and pray Dr. Margulies can study this and I’ll provide more info if he needs it. My materal grandmother weighed 300 lbs, Please forward this to Dr. M. for me. I will be forever grateful.

ANSWER: There are some familial forms of Cushing’s syndrome, especially when they are caused by bilateral adrenal nodules. Your granddaughter should definitely have a thorough evaluation.



20) 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.



21) 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.



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

QUESTION: Hello, I had a question regarding Fludrocortisone. I just found out I am pregnant and my endocrinologist told me to stop taking my Fludrocortisone. I was under the impression it was okay to take while pregnant. Do you have any information regarding this. Thanks.

ANSWER: Fludrocortisone is safe in pregnancy. Generally, there is no reason to change the hydrocortisone and fludrocortisone regimen unless complications occur. If there is severe morning sickness, extra hydrocortisone may be needed. If there is significant hypertension late in the pregnancy, a reduction in the dose of fludrocortisone may be useful.



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

QUESTION: I have Addison's Disease. I came off Estrogen 5 months ago. I have been having a lot of trouble with the Addison's since then. Two very close ER visits, low on cortisol all the time. I remember a previous flier from NADF stating that people who are off Estrogen need more cortisol. It seems true for me. I am thinking of going back on Estrogen because I was so stable then. I took myself off the Estrogen. Is this a common problem with Addisonians? Do you know if most Addisonians go back on Estrogen or take more cortisone?

ANSWER: Estrogen increases the amount of a protein (cortisol binding globulin) that carries cortisol in the blood. With increased levels of this protein, there is actually a minor need for higher doses of hydrocortisone to allow a normal free, or active hydrocortisone blood level while on estrogen. That means that if estrogen is withdrawn, free hydrocortisone levels are higher, not lower. In most postmenopausal women these differences are very minor, so adjustments in hydrocortisone dose is usually not necessary. Another effect of estrogen that can be important is the slight salt retaining effect. Withdrawal of estrogen might necessitate a slight increase in need for fludrocortisone to make up for the difference. In any case, with major changes apparently occurring after withdrawal of estrogen, it is a good time to see your endocrinologist to review all medical issues, check for possible changes in thyroid status (this can change with estrogen and can have a major impact on steroid sensitivity) and initiate appropriate changes in hormone dosages.



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

QUESTION: I have had Addison's disease due to a bilateral adrenalectomy, and take 35 mg of hydrocortisone daily as a maintenance dose. I was put on a 12.5 mg dose of DHEA sulfate by an endocrinologist, but my family doctor found this level to be too low so I stopped taking it for a while. After checking with a specialist, my DHEA and cortical levels were (...) He told me to go back on my DHEA, but not to change my dose of hydrocortisone because taking the DHEA would bring my cortical levels to normal. Is this correct?

ANSWER: DHEA will not effect the cortisol level. It looks like the dose of hydrocortisone you are taking may be too high for a maintenance dose.



25) 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!



26) 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.



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

QUESTION: I have been really nauseated and throwing up again, just like I did when I first got diagnosed in 2012. I just got my lab results and my BUN is really high. Have you had anyone tell you they have had kidney failure either before or after an Addison’s diagnosis?

ANSWER: You need to go over this with your endocrinologist. Some elevation of BUN may occur just from being dehydrated at the time of the blood test. You need to know if you have an underlying kidney disease (that would not be due to the Addison’s disease), what is causing it, and what type of treatment is needed.



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

QUESTION: I am a 27 year old Addisonian male, and was diagnosed at the age of 13. Since then, I have been really skinny. I am currently 6 feet tall, and weigh 135 lbs. I have tried almost everything to put on muscle, but have not been able to. I read that when diagnosed at a young age, there should be testosterone and growth hormonereplacement therapy. But I never had this. Both my father and brother are much heavier with muscle than I am. I was wondering if this could be caused by low testosterone, and if so, would my Addison’s have anything to do with that?

ANSWER: You should get a thorough endocrine evaluation, as you raise some appropriate issues. If you have typical autoimmune Addison’s disease, it usually would not include growth hormone deficiency, and you are 6 feet tall. Testosterone deficiency is another matter, and should be investigated. Of course, your dosage of glucocorticoids could be the basic issue. Your endocrinologist should evaluate the adequacy of your dosage and consider a trial of an increase.



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

QUESTION: I have CAH and take fludrocortisone, but it doesn’t help me entirely with losing salt. I am losing way too much salt, and taking more fludrocortisone doesn’t help me feel better. This happens every few weeks, and I feel like I might go into an adrenal crisis, but then I’m fine for a while. According to the doctors, this isn’t due to my thyroid. What should I do?

ANSWER: You clearly need a more experienced endocrinologist to work with you. There may be something else going on besides the salt losing CAH. It takes a clinician to sort it out. One specific suggestion is to check your plasma renin as a guide to hydrocortisone dosing.



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

QUESTION: I have been researching this medical condition as my 15 year old niece was diagnosed with it a year ago. The tumors found on her adrenal glands were found to be benign and were never removed. All of the research I have obtain indicates when tumors are found whether or not they are benign they are removed immediately. Is this correct? Also in this case where the tumors were found to be benign would this mean that this is NOT considered to be a rare form of cancer?

ANSWER: If the diagnosis of pheochromocytoma is confirmed, the tumors should be removed because of the risk of severe episodes of high blood pressure. Most pheos are benign. If pheos are found in both adrenals, especially in a young person, there is a high probability that this is a genetic disorder. The endocrinologist should do genetic testing for familial pheochromocytoma and MEN 2.



31) 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.



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

QUESTION: I have been diagnosed with cyclic Cushing’s. I have a 2 cm adrenal mass. I have had my thyroid removed due to medullary thyroid cancer, and still no surgery to remove my adrenal gland. They tell me I’m fine after I come to the office in a wheelchair. I gain weight; can’t eat anything much but cottage cheese and bland foods. I live on the couch due to fatigue and I sleep 16 hour days. I am so Tired. No one will help me and remove this adrenal gland!

ANSWER: With the history of medullary thyroid cancer, I am concerned that the adrenal tumor might be a pheochromocytoma. The two disorders are associated in MEN 2. I would certainly expect her doctors to be aware of this. Cyclic Cushing's syndrome is usually caused by a pituitary adenoma rather than an adrenal adenoma. I suggest that she get clarification from her endocrinologist about the hormonal output from her adrenal mass. If it is a pheo, surgery would be necessary. If it is not a pheo, surgery should be considered if there is a consistent abnormal production of adrenal cortical hormones.



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

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

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



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

QUESTION: I was diagnosed with Addison’s Disease when I was 23 years old. I’m a female and have since gone on to have three healthy children and have led a very productive life. For the first 20 years, I was treated with Prednisone and Florinef. About 6 or so years ago, my doctor switched me to 15mg of Hydrocortisone a day, along with 0.1mg of the Florinef. I also take 50mg of Zoloft (which was prescribed to help deal with extra anxiety since I do not produce extra cortisone when I’m feeling stressed). I am now 49 years old and feel that I might be entering menopause - I have been having severe irritability, and anxiety and depression. It’s like a cloud has descended over me and I actually feel the weight of it on my chest. I’ve always had short bouts of blueness but they never lasted very long and I think they have been related to my cycle however now the bouts of blueness and depression have settled in and aren’t lifting. I am wondering if hormone changes will require additional help with my steroid usage?

ANSWER: Menopause itself does not necessarily require an adjustment in hydrocortisone dosage. However, I think it is time to discuss with your endocrinologist how you are feeling. Since all of the hydrocortisone is taken in the morning, it might be worthwhile considering a restructuring of the dosage to have some in the morning plus a little in the afternoon. Also, consider a change in the Zoloft - perhaps an increase in dose, or a change to something else. If the menstrual cycle has stopped and there are significant flushes and night sweats that disturb sleep, consider adding a low dose of hormone replacement therapy if there is no contraindication. This may help with sleep, energy and mood.



35) 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.



36) 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.



37) Q&A from the March, 2019 NADF newsletter:

QUESTION: I have a child with adrenal insufficiency, and it’s time for them to get the medically recommended vaccinations. Is there a protocol for vaccinations in AI children?

ANSWER: NADF, CDC and most endocrinologists advocate universal vaccinations for all individuals with adrenal disorders, including AI. There are no guidelines mandating stress steroid coverage for vaccinations in children or adults, unless the person develops fever or other serious signs of illness. One should realize that the risk nowadays of acquiring measles, flu or other diseases is far greater and more life-threatening than any possible vaccine side effects. See CDC recommendations.



38) 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.



39) 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.



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

QUESTION: I have been on steroids for 19 years for secondary AI and proton pump inhibitors (PPI) for 18 years due to the steroids. I’m now having side effects of long-term use of the steroids: thinning skin, bruising, thinning bones (stress fractures), increasing A1c, etc. I’ve also developed chronic reflux which has resulted in repeated sinus infections. My internal medicine physician has discussed the possibility of a Nissen fundoplication for the reflux. Do the endocrinologists at NADF know if there is success with this procedure due to having to be on steroids for the rest of your life? Does the stomach tissue thin with the chronic steroid use like your skin does with the long-term steroid use? In May I had a bleeder cauterized in my stomach and many polyps due to long term use of PPI’s. My ferritin was 9. Any feedback would be appreciated.

ANSWER: There are multiple issues presented here. First, long-term use of glucocorticoids can cause thinning and easy bruising of the skin and can contribute to bone loss. Generally, these effects are related to the dose of glucocorticoids as well as the length of time taken. If replacement doses, such as prednisone 5 mg per day or hydrocortisone 15 to 20 mg per day are used, these effects are minimized. However, some people are sensitive to even these or lower doses and may have the side effect anyway. If higher doses are used over many years, the side effects are more likely to appear. Most people on replacement steroids do not have significant acid-peptic problems. Acid reflux is a common problem in the general population, but may be aggravated if high dose steroids are needed. Unfortunately, the long-term use of proton pump inhibitors for acid reflux has been prevalent for a long time. We now recognize that these drugs can contribute to bone loss. I usually advise substituting H2 blockers such as Zantac or Pepcid in place of the PPIs. Surgery for the reflux is rarely needed, but if there is serious damage to the esophagus that cannot be controlled, it may be considered. There is no specific issue with the surgery in people with AI. The steroids should not cause thinning of the stomach tissue, but the upper endoscopy should provide information about the integrity of the stomach and esophageal anatomy. I would suggest a consultation with a gastroenterologist and a GI surgeon who has experience with this procedure.



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

QUESTION: I have had autoimmune Addison’s for more than 30 years. I have never had a crisis! I took 20 mg of hydrocortisone in the morning, and I seemed to function fine for the rest of the day. I went to a new endocrinologist and they lowered my dose to 15 mg every day. She told me to take my hydrocortisone twice or three times a day. I did that for about six years but I never felt as good as I did when I took all my hydrocortisone at the same time each day. So, I started taking it all at once again about 2 years ago. Since proper dosing to mimic circadian rhythm seems to be an issue for many, I wonder if it is okay that I continue with my once a day dosing preference?

ANSWER: Although most people with Addison’s disease do best with a split dose, your own experience feeling better with all the hydrocortisone in the morning is useful. As long as there is no let down in energy in the afternoon or early evening, it is perfectly appropriate to use your regimen of 20 mg in the morning. The fludrocortisone dose should depend on blood pressure, potassium level and renin level.



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

QUESTION: My endocrinologist tested me for antibodies and it was negative, but I’ve had hypothyroidism for about 18 years. Since the test was negative, my doctor says it can’t be autoimmune and must be caused by something else. Before being diagnosed with hypothyroidism, I was hyperthyroid for 9 months but did not have radiation therapy. I was on medication, (I can’t recall what), and my thyroid went back to normal for several years. Is there another factor that could have caused my condition?

ANSWER: The history of hyperthyroidism prior to the hypothyroidism is a fairly common story. It makes autoimmune thyroid disease a certainty. The hyperthyroidism (Graves’ disease) was treated with medication and went into remission, then as the underlying cause progressed manifested as hypothyroidism (Hashimoto’s thyroiditis). Graves’ and Hashimoto’s are two manifestations of one disease. Stimulating antibodies predominate in Graves’ and destructive antibodies predominate in Hashimoto’s. Transition from hyper to hypo is normal. Transition in the other direction can occur, but is less common. Although antibodies for Graves’ and Hashimoto’s are usually found when the disease begins, they are not always found, and are not necessary to make the diagnosis if the clinical presentation is consistent with either disease. Thyroid antibodies also tend to diminish or disappear over time, so with an 18-year history it’s likely the thyroid antibodies present earlier are long gone.



43) 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.



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

QUESTION: I have no pituitary and no adrenals. I also have diabetes and cirrhosis from fatty liver. My liver disease is progressing fast, and I cannot receive a transplant. I was wondering how to manage steroid doses. I am having to inject 100 mg for adrenal insufficiency symptoms. It perks me up but only for a day or 2 then I crash again. Could the liver disease have increased my steroid needs? I’m wondering how to dose. I read you can get AI from liver disease.

ANSWER: It is difficult to provide specific guidance on the management of your specific adrenal insufficiency. Whatever the cause, the progressive liver disease is a serious complication. Liver disease does not cause adrenal insufficiency, but previous treatment may have included steroids, which may have caused secondary adrenal insufficiency. The use of sporadic injections of hydrocortisone is unusual. I suggest that an endocrinologist familiar with the complete history and current medical issues be directly involved in treatment.



45) 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.



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

QUESTION: We recently corresponded in relation to my mom who suffers from Addison’s disease. Just to review my mom was diagnosed almost 30 years ago and has taken a combination of steroids over time to treat the disease. My mom just turned 73 and she is starting to suffer more complications related to AD. One symptom is that she is having some cognitive trouble. Certainly, we understand that is common symptom for AD. However, the cognitive trouble seems to be on the increase. Her endocrinologist recently saw her and noticed her glucose levels were up indicating a possible change into Diabetes 2 along with her AD. Furthermore, she did an MRI of brain and noticed that there was some ‘shrinkage’ of the brain, possibly due to vascular restrictions caused by AD or Diabetes 2. These findings were not deemed significant but she is now being referred to a neurologist for more testing.

ANSWER: Most people with Addison’s disease do not die of the disease or from an adrenal crisis. Therefore, people can live with disease and may develop problems related to aging that are not necessarily caused by the adrenal insufficiency or treatment with replacement steroids. Two of the common disorders of aging are type 2 diabetes and cognitive issues. Each one deserves attention. Type 2 diabetes in the setting of Addison’s disease can be managed with the same techniques as in people without adrenal insufficiency: diet that reduces sugar and simple carbohydrate, exercise, weight management and medications. Cognitive changes should be evaluated by a neurologist. The presence of vascular shrinkage may be simply an age factor. it is not due to the Addison’s disease. Most neurologists can do a baseline cognitive assessment and will look for treatable causes. Medications can sometimes help and are not contraindicated by the Addison’s disease.



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

QUESTION: Humana is my insurance provider for Medicare Part D benefits. When I refilled my prescription recently, I learned that Solu-Cortef is not included in the drug formulary for my plan. Instead, they would cover methylprednisolone acetate. I talked to my endocrinologist and he was reluctant to recommend the substitution. I’m curious about a second opinionI thought I might not be the only person to encounter this issue.

ANSWER: I suggest that your endocrinologist ask the insurance company for an exception to their formulary. Solu-Cortef isstandard of care and they should approve it off formulary.



48) 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.



49) 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.



50) 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.​



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

QUESTION: I’ve had secondary AI for 10 years and feel confident in my ability to manage it on a daily basis but having watched my husband prep for his first colonoscopy recently, I feel some trepidation. After all, isn’t diarrhea one of the primary triggers of adrenal crisis? Colonoscopy preparation results in extreme diarrhea for several hours! I’d appreciate any guidance you can offer on what I need to discuss with my endocrinologist and my surgeon, and how I can limit the risk to my health during the preparation.

ANSWER: Despite the concern about the diarrhea, colonoscopy is not a cause for concern in people with primary or secondary adrenal insufficiency. During the prep day when medications are given to help with the clean out and clear liquids are necessary, if appropriate fluids are consumed there will be no need for extra doses of hydrocortisone. I do recommend using clear fruit juices like apple juice and white grape juice because they add needed calories. The procedure itself is also not stressful. Light anesthesia is used, not general anesthesia. Pre-surgical stress dosing of hydrocortisone is not needed. I would simply consider an extra dose of 10 mg orally before going to the procedure only if you feel very anxious. It is important to inform the physician doing the colonoscopy and the anesthesiologist about the adrenal insufficiency, so they are prepared to give IV hydrocortisone if the procedure is prolonged or there are any complications.



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

QUESTION: I have Addison’s and Type 1 diabetes, in addition to Hashimoto’s. I have always had an emergency kit to inject dexamethasone in case of a crisis. Now I have glucagon for an emergency injection for low blood sugar. I asked my endo - if I am found unconscious with no other clue - give dexamethasone injection, then check if low blood sugar, give glucagon? My endo said just give the glucagon, and let the ER provide the steroids when I get to the hospital. But my recent crisis was a good example of what many of us know - if we don’t know to give ourselves the emergency injection, we may not get it at all. I did not get admitted to ER in North Carolina for many hours and was too out of it to give myself the injection. That did not go well. Any advice welcome.

ANSWER: With the combination of Addison's disease, Hashimoto's thyroiditis and type 1 diabetes, the most likely cause of loss of consciousness would be hypoglycemia. Therefore, if found unconscious, I would recommend that someone give sc glucagon immediately. An adrenal crisis generally takes hours to develop, with significant symptoms, including nausea, vomiting, diarrhea, muscle cramps and fatigue. IM or SC steroids (usually hydrocortisone rather than dexamethasone) can be self administered or given by someone else if vomiting prevents the retention of the oral steroids. I basically agree with your endocrinologist. The issue of getting appropriate emergency management of your adrenal crisis is another matter. NADF strongly recommends wearing a MedicAlert bracelet or necklace indicating adrenal insufficiency, carrying a NADF wallet card giving instructions, and most importantly, loudly insisting to the ER medical staff that you have adrenal insufficiency and are in an adrenal crisis.



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

QUESTION: I've had Addison's disease for 25 years. Four weeks ago I got Covid. I am fully vaccinated and had two boosters. I just thought I had a cold. I've been negative for about 3 weeks but still have constant sinus drainage in the back of my throat. I spoke with my primary care physician today to see if he could prescribe something for me. He said my Addison's is complicating things. He normally would order prednisone but can't since I have Addison's. Why can't I take prednisone?

ANSWER: I would expect that the endocrinologist would prescribe Paxlovid within the first 5 days of symptoms. This would have diminished the probability of post Covid symptoms. If Paxlovid was not prescribed, the persistent throat symptoms are quite common. Prednisone would not be useful here, but other simple treatments for the symptoms, like Mucinex would be appropriate. Either way, the symptoms will eventually subside.



54) 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.



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

QUESTION: Is it possible to have taken too much sodium in a diet and resultant equilibrium changes and elevated blood pressure?

ANSWER: It is possible to consume too much sodium, causing high blood pressure. Since the fludrocortisone tells the kidneys to retain sodium, temporarily reducing the dose will correct it. One concern, however, is this may be a sign that you are developing essential hypertension, perhaps as a familial risk. I suggest that you monitor BP on your normal dose of fludrocortisone for any trends toward higher readings. If BP is often higher than in the past, discuss options with your endocrinologist. When hypertension does develop in Addison’s, the usual first approach is to reduce the maintenance dose of fludrocortisone. Sometimes a non-diuretic antihypertensive medication is added.



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

QUESTION: My endocrinologist told me that I’m unable to build muscle tissue and get stronger from disciplined exercise. Is that true?

ANSWER: Glucocorticoids do contribute to wasting and atrophy of muscles, especially the proximal muscles (closer to the body) in the arms and legs. This is called steroid atrophy. It will occur when there is prolonged exposure to doses above the normal physiologic dose. In treating adrenal insufficiency, we try to keep the replacement dose below that level, so there is a smaller risk of atrophy. If there is atrophy from previous exposure, but the dose is now stable, there is the potential to regain strength in these muscles over time. If there is a lot of atrophy, it can take many months to regain the strength with exercise and good nutrition, including adequate protein. There may be other factors in your situation that may contribute to a lack of muscle recovery, such as other diseases or medications and age. Older people have a much harder time regaining muscle. Discuss this with your endocrinologist.



57) Q&A from the June, 2023 NADF newsletter:

QUESTION: I have secondary Al from inhaled steroids. How soon after my diagnosis can I try to wean off the hydrocortisone?

ANSWER: Secondary adrenal insufficiency is difficult to predict. Recovery is highly variable, depending on the dose of steroid that had been used and the length of time. if inhaled steroids are still necessary, tapering off the hydrocortisone may not be feasible. Read the NADF article about SAI. Coordinate with your pulmonologist and endocrinologist. Link to article: https://www.nadf.us/secondary-adrenal-insufficiency.html



58) Q&A from the June, 2024 NADF newsletter:

QUESTION: Q: I had Cushing’s disease and a macroadenoma pituitary tumor removal in 2011. With Cushing's, I stopped my cycle in my late 30s and experienced menopause symptoms in my late 40s, including horrible hot flashes. Post surgery, my pituitary gland is not functioning, and I take thyroid and hydrocortisone. Just recently, I started getting hot flashes again! I am very confused by this, I am 60 years old.

ANSWER: A: The recurrence of hot flushes at this time in your life is, indeed, confusing. I suggest a visit with your endocrinologist to get some new baseline hormone levels. You should be menopausal at this age, and the hypopituitarism caused by the surgery 13 years ago would likely eliminate the normal pituitary gonadotropin (FSH and LH) increase typical of a woman of 60. One possibility is a partial recovery of residual pituitary production of FSH and LH. Another possibility is excess thyroid hormone dosing causing hyperthyroidism that may mimic menopausal heat intolerance.





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

If you would like to submit a question E-mail Question.    

If you see any errors in these Q&A's, please report them to Webmaster    


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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