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Found 109 matches in 79 Q&A's.


1) 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.



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

QUESTION: My doctor put me on Florinef because of low sodium and dizziness (sometimes passing out). Does this mean Addison's disease? He never mentioned it. The Florinef has helped tremendously and I don't feel dizzy now, just fatigued. Can you, in fact, have Addison's and only need Florinef?

ANSWER: Florinef can be used to increase sodium retention in the absence of adrenal insufficiency. The most common use is in the management of orthostatic hypotension, where blood pressure falls on standing. The Florinef helps to increase the blood pressure and prevent dizziness caused by the fall in blood pressure.



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 March, 2005 NADF newsletter:

QUESTION: I have benefited greatly from DHEA supplementation. My doctor is not big on this. I am taking pharmaceutical grade 20 (mg?). The more I take the better I feel. At 150 (mg?) I was feeling GREAT but then I read to only take 16 to 20 (mg?) per day so I am now taking just the one tablet. Does the NADF have any recommendations on supplementing with DHEA as to frequency and dosage size? (I get the DHEA at the health food store and the bottle is at home. I am writing this in my office so I can't verify the dosage ...mg? I think) Thank you so much for your guidance.

ANSWER: My suggestion for DHEA is 25 mg per day for women, 50 mg for men. It doesn't seem to do much for everyone. If it helps with overall sense of well being (admittedly vague), keep taking it. If there is no response, stop it.



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

QUESTION: I live in Argentina. I am taking hydrocortisone (50 mg per day) and fludocortisone: one pill per day. My problem is that I suffered from high blood pressure before I was diagnosed with Addison's, so I can not take extra salt, and because of the warm weather, I sweat a lot and am losing too much salt and my endo does not know how to control it.

ANSWER: People who have Addison's disease as well as hypertension still need to take mineralocorticoid replacements like fludrocortisone, but often have to modify the regimen. There is a significant amount of mineralocorticoid activity in the hydrocortisone, and 50 mg is a fairly large dosage. If there are any signs of cortisone excess, such as weight gain, facial roundness, stretch marks or facial redness, it may be useful to work with your doctor on a slight reduction in the hydrocortisone dose first. Next, a reduction in the dose of fludrocortisone may help lower the blood pressure. I have used doses as low as 1/2 pill every 3 days. Finally, antihypertensive medication can be added, but never a diuretic. Medications like calcium channel blockers, beta blockers, and alpha blockers can be used safely in Addison's disease.



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

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

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



7) Q&A from the 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.



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

QUESTION: I just read the email on decreasing your cortisone. I have been on 30mg for 27 years and I have tried to decrease it to 25mg. I only gave it about a week because I was tired. Do you think I should give it longer and see how I feel since the high dosage it not good for us? Please let me know what you think. Thanks.

ANSWER: Although I maintain that most Addisonians can and should get by with lower doses of hydrocortisone, it is not appropriate for everybody. Each Addisonian has his or her own personal medical situation that will affect their steroid needs. Other medical conditions, other medications, stresses, ability to exercise, mood, age, weight are just a few of the variables. Talk to your doctor about all of this before trying to taper the dose again.



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

QUESTION: I have been a vegetarian for 20 years. In the years before I was diagnosed, my cholesterol profiles where great. Three years ago, when I was in and out of the hospital, my cholesterol came back as 289 and I had not really eaten for days. (My family doctor had started me on Synthroid a few weeks before this.) For the first 6 months or so after I was diagnosed and medicated for Addison's & hypothyroidism my lipids tests still came back pretty nasty. Although my cholesterol has been steadily coming down.....it's a 205 now, my triglycerides have been getting worse. I just received the results from my last test and my triglycerides are 340 (looks like 150 is the top of the scale of acceptable. Is there something with Addison's or hypothyroidism, or with prednisone, fludrocortisone or Synthroid that is doing this? I am 42 years old. While I'm asking questions, I have gone from a size 6 to a size 12 since being diagnosed and I am tired of being asked if I am pregnant because it's all in my belly and my face. My innerocular pressure, which has always been fine, is at the level that I will have to start taking mediations if it does not go down. I also have esophagus erosion and have started taking Nexium to help. Over the past year, my prednisone has been cut down to just 6 mg per day, I take .01 fludrocortisone every other day and 88 Synthroid.

ANSWER: Lots of issues here. First of all, if there is continued weight gain with abdominal fat production, it is likely that the dose of glucocorticoid is too high. Since the dose of prednisone has been coming down, this problem may be solved with time. If not, a lower dose might be tried (also, I think hydrocortisone in two doses is better than prednisone). High lipid levels can occur from excess glucocorticoid doses, but also from hypothyroidism, which was just recognized at the time the cholesterol was highest. Replacement thyroid hormone will help lower the cholesterol. If the total cholesterol and LDL levels come down, but triglyceride levels stay high, I would first make sure the blood tests are done while fasting, because triglycerides are always highest after a meal. Fasting high triglycerides of 150-200 are not that significant. Higher levels can be treated with omega-3 fish oil (over the counter), or prescription drugs like Lopid, TriCor or prescription strength niacin. My advice is to concentrate on weight loss, lower doses of glucorcortioids, adequate replacement thyroid hormone and excercise before adding other drugs.



10) 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.



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

QUESTION: I have a question about supplemental vitamins. I have been told that because I have celiac and Addison's, I should be taking many supplemental vitamins. I see a nutritionist and belong to a support group for celiac and I get a lot of mixed messages. The biggest problem I have is that it seems no one, even my doctors, know that much about Addison's. It has been a year since I was diagnosed with Addison's and a year and a half with celiac disease. I work a stressful job and feel that I need to retire or find another job, as I have many times when my sodium level has been low. I now know when to recognize this so that I do not have to be hospitalized each time. Any help you can give me would be appreciated. Thank you.

ANSWER: There is no specific vitamin regimen necessary for Addison's disease. However, I usually suggest a general multivitamin/mineral supplement to a good healthy diet. Extra calcium is very important, especially for post-menopausal women. The celiac disease tends to cause a malabsorption of vitamin D. I suggest that anyone with celiac disease have a serum 25-OH vitamin D level checked. If it is low, adding extra vitamin D is essential. Doses of 800 to 1200 U per day are useful for normal to slightly low D levels. If the blood test shows very low levels (below 20), then prescription strength vitamin D should be given and monitored by your doctor.



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

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



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 March, 2009 NADF newsletter:

QUESTION: I have had Addison's disease since 1969 and I am 73 years old. I have always been active. This year, it is harder to do things and a lot of muscle and joint pain, which I take pain meds for. My question: Does age ever require an increase in steroids? I take 25 mg. cortisone acetate in the am and 12.5 mg pm. I also take 0.1mg fludrocortisone acetate and 0.1 mg. synthroid. Thank you.

ANSWER: There is no general tendency to need a higher dose of replacement glucocorticoid with aging. The aches and pain are more likely the normal symptoms of arthritis rather than adrenal symptoms. Discuss the symptoms with your doctor. You might benefit from a consultation with a rheumatologist.



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

QUESTION: At the support group meeting, a woman said that her doctor pre-fills syringes for her with the dexamethasone and that they're good for up to a year. I've been told that once they're in syringes, that they go bad quickly. And another member said that her doctor pre-fills her syringes also.

ANSWER: I am not comfortable with the idea of prefilled syringes, mainly because of the risk of contamination. The prefilled syringe is not totally air-tight and bacteria might get in there.



18) 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.



19) 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.



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

QUESTION: I was diagnosed with Addison's Disease in 1993 at the age of 46 years. It was decided in about 1998 that I should have a bone density scan done. As a result of that test, I was prescribed Fosamax (70 mg) once a week, and have been on it since (also because of the steroids prescribed to treat the Addison's). I read somewhere that perhaps the benefits of Fosamax diminish after 10 years, and could in fact become a harmful thing. Can you enlighten me on the subject? Thank you!

ANSWER: Fosamax and the other bisphosphonate drugs, Actonel and Boniva, are very effective in improving bone density and reducing the risk of fractures in people with osteoporosis and in people at increased risk of developing osteoporosis because they take high dose steroids or drugs like aromatase inhibitors for breast cancer. It is important to note that many doctors have prescribed these drugs incorrectly for lesser degrees of bone loss, such as osteopenia. Osteopenia is a mild bone loss that does not produce the significant risk of fracture seen in osteoporosis. It is very important for each person who has a bone density study to go over the degree of bone loss to clarify if it is osteopenia or osteoporosis. If it is osteoporosis, the bisphosphonate drugs can be used, and follow-up bone density measurements should be performed about every 2 years. Most of the time there is gradual improvement and it often plateaus at 5 to 10 years. Very often there is enough improvement that the previous oseoporosis has reverted to osteopenia. When that is seen, or if the person has been on the drug for 5 to 10 years and the effect has reached a plateau, the drug should be stopped. It is also important to note that the replacement doses of steroids used for Addison's disease do not necessarily mean that bisphosphonate treatment is needed. I would use it only if there is evidence of osteoporosis, or if aromatase inhibitors are also needed.



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

QUESTION: I have Addison’s disease and Celiac disease. I also have high blood pressure. I take 20 mg of Bystolic for high blood pressure, but it is still high. My doctors are taking a wait and see attitude, but I am concerned. I thought that people with Addison’s disease had low blood pressure. I take 30 mg of hydrocortisone a day. I don’t take any Florinef. Do you think Florinef would help? Thank you.

ANSWER: People with Addison’s disease can have hypertension, usually essential hypertension as a familial tendency, or due to kidney disease. When this occurs, medications such as beta blockers or calcium channel blockers can be used, and the dose of mineralcorticoid is usually lowered or eliminated as long as the serum potassium is not elevated. Diuretics should not be used in Addisonians. If the potassium is elevated, low dose fludrocortisone can be added, with adjustments in the antihypertensive drugs to compensate. There is no reason to allow the blood pressure to stay high.



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

QUESTION: My IGG levels are so low, that two doctors have said it is imperative I begin IV IGG treatments. It is not a easy decision to begin such therapy, and once begun, it is a process that involves risk and side effects.

ANSWER: Low levels of gamma globulin can contribute to frequent bacterial infections. This condition is not due to the Addison's disease. Management with regular IgG infusions is indicated and should have no significant effect on the steroid management.



23) 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.



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

QUESTION: We have a member, an Addisonian since 1940, who has “diastolic heart failure." The doctors are telling her she has to go on a low salt diet, and want to put her on Lasix. The last time she was given Lasix, she had lots of problems. Any advice?

ANSWER: Addisonians generally have trouble with diuretics because they are unable to handle the drop in blood volume produced by the diuretic. It is best to start with tapering or eliminating the mineralcorticoid (fludrocortisone), then, if necessary, switching from hydrocortisone to prednisone. In addition, there are other cardiac medications that can reduce the load on the heart without resorting to a diuretic. All avenues should be explored before adding Lasix.



25) 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.



26) 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.



27) 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.



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

QUESTION: My question is, could the adrenal gland have an adverse affect on the thyroid? I’ve been living with a thyroid condition for many years, but ever since 2008 my test results have been jumping every six weeks from one extreme to the other. In other words, either I’m under the range (0.03) or over the range (5.74). A pharmacist recently mentioned to me that they sometimes see T4 testing, which tells more of what’s going on with the adrenal gland. That made me wonder if I too could have some type of adrenal issue affecting my thyroxin levels. Icertainly would appreciate your thoughts. I’m beginning to feel my doctors in internal medicine are grasping at straws trying to figure this one out. Thank you again for anything you can offer.

ANSWER: There is no direct affect on the thyroid from any type of adrenal disease. However, it is important to remind anyone with adrenal disease that thyroid disease is very common. People with autoimmune Addison’s disease have about a 50% probability of developing autoimmune thyroid diseases such as Hashimoto’s thyroiditis or Graves’ disease. When thyroid disease and adrenal insufficiency co-exist, the management of both must be coordinated. When severe hypothyroidism and adrenal insufficiency are diagnosed together, it is important to treat the adrenal insufficiency first, otherwise the thyroid hormone can worsen the adrenal symptoms.



29) 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.



30) 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.



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

QUESTION: I have had Addison's for about 6 years now and have been taking vitamin D3 for about 2 years. I recently started taking 10,000 IU a day. I never really thought about how much that was until I did some research about it. Some research says that is not too much. Others say it is too much. I am 48 years old and my doctor told me the other day that since 2007 I have had 6% bone loss. So is 10,000 IU vitamin D3 too much? If so, how much should I take per day? Thank you.

ANSWER: First, the vitamin D issue has nothing to do with the Addison's disease. There has been much controversy about vitamin D lately. Low levels of vitamin D from lack of sunlight, dietary abnormalities, or from a relative lack of absorption of vitamin D from the intestines are quite common. Recent improvements in the accuracy of laboratory measurements of D allow us to assess vitamin D deficiency much better than a few years ago. Most labs will report a level of 25-hydroxy D (the best way to look at it) below 30 as abnormal. Levels below 30 can contribute to decreased absorption of calcium and a tendency toward osteoporosis, which will increase the risk of fracture. If osteoporosis is found, a measurement of vitamin D should be made. Supplements of vitamin D to bring the blood level up to normal should be given. Although some would aim just to bring the level to above 30, I think it should be over 40 in someone with osteoporosis. Most people can achieve these levels with vitamin D doses of 1000 to 2000 units per day, but some require much higher doses, especially if there is bowel malabsorption. The important point is to check the blood level of D as well as calcium to assess the effect of any regimen.



32) 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.



33) 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.



34) 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.



35) 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.



36) 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.



37) 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.



38) 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.



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

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

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



40) 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!



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

QUESTION: I have been using Prednisone for 35 years to treat my adrenal insufficiency. At a doctor’s suggestion,I switched to hydrocortisone, but it did not work well for me and I was tired all the time! I went along with a trial period of using hydrocortisone that the doctor suggested, though my fatigue symptoms continued. For 2 months I felt really lousy, and when I went back to Prednisone I felt perfectly fine within hours. However, doctors still sometimes insist that I should be on hydrocortisone instead. Is hydrocortisone really so preferable for treating Addison’s that I should be using it instead of Prednisone to treat my symptoms?

ANSWER: I suggest it is best to listen to your own body. Although hydrocortisone is more physiologically similar to normal glucocorticoid production than Prednisone, especially when given in divided doses with the highest dose in the early morning, if you feel better on Prednisone, stick with it. I suspect that your body has become used to the longer action of prednisone, so the dip in glucocorticoid activity in the afternoon and evening on hydrocortisone feels uncomfortable. As long as there are no Cushingoid side effects or sleep disturbances on the Prednisone, and the fludrocortisone dose is adjusted appropriately, there is no problem in staying on Prednisone.



42) 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.



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

QUESTION: I have had secondary pituitary adrenal insufficiency for the past 10 years. I have severe weakness in all extremities; the left worse than the right. My base dose of steroids is 6.5 mg of prednisone. I have had bilateral hip replacements and other orthopedic problems. My left fibula will dislocate from no trauma. My ankle strength is fair (3/5) and never seems to get any stronger. I was a physical therapist and was very active before my adrenal glands failed. I fall frequently. I cannot exercise heavily due to the Addison’s fatigue, severe asthma, and I am morbidly obese. Due to exacerbations from the asthma, I am on a roller coaster with the prednisone. Is it possible to increase strength through exercise taking a steroid for life?

ANSWER: The array of medical problems presents a challenge for you. The need for steroid replacement therapy itself does not prevent you from exercising and improving your strength. However, higher doses of steroids like prednisone can contribute to muscle weakness, so it is important to work with your doctor on finding the lowest dose that keeps you comfortable. The obesity is also a major issue. It exacerbates the arthritis and makes it harder to exercise. With less exercise, there is more weight gain. There is no magic formula, but try to reduce the dose of prednisone if possible, diet as well as you can, and try to find some form of exercise that will not cause further injury.



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

QUESTION: I have Addison’s disease, and for the last five years pancreatitis. My doctors think I have autoimmune pancreatitis, but have not yet done a biopsy. The last time they treated it was two weeks ago, and they opened a bile duct which showed no signs of kidney problems. Is there any information you have about autoimmune pancreatitis?

ANSWER: Autoimmune pancreatitis is not an endocrine disease and is not related to autoimmune adrenal insufficiency. It is a gastrointestinal autoimmune disorder in which antibodies injure the pancreatic digestive cells (not the endocrine cells), leading to a deficiency of pancreatic digestive enzymes. This causes poor absorption of nutrients, fatty diarrhea, weight loss and malnutrition. The evaluation is done by GI doctors and includes ruling out other GI and pancreatic diseases. The treatment is replacement oral digestive enzymes and changes in diet.



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

QUESTION: I have adrenal insufficiency, and need to go in for intravenous immunoglobulin (IVIG). Should I take a stress dose of steroids in preparation for the treatment?

ANSWER: Definitely discuss your adrenal insufficiency and stress dosing concerns with the doctor prescribing the IVIG. Glucocorticoids like hydrocortisone are commonly given to people undergoing IVIG to treat potential reactions, even if they aren’t adrenal insufficient. Anyone with adrenal insufficiency will then likely need them, but the dosage should be worked out between you and your doctor.



46) Q&A from the June, 2014 NADF newsletter:

QUESTION: For 5 years I have been fighting intermittent health problems I believe to be caused by a pheochromocytoma. CAT scans have shown that I have a small adrenal tumor, but doctors have so far told me it is “not possibly” a pheo. Am I wrong in thinking it is a pheochromocytoma that is causing my problems?

ANSWER: Pheochromocytomas can produce intermittent symptoms. The best way to tell is to get plasma metanephrines taken at the time symptoms and high blood pressure occur. If the tests are negative at that time, then pheo is ruled out.



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

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

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



48) Q&A from the March, 2015 NADF newsletter:

QUESTION: I am a diabetic with Hashimotos disease. I recently had my thyroid gland taken out. My doctors say I will very likely lose my adrenal glands as well. Is this also your opinion?

ANSWER: That’s a bit pessimistic. Autoimmune adrenal insufficiency is quite rare compared to the incidence of Hashimoto's thyroiditis or diabetes, so it is still very unlikely to occur. If the diabetes is type 1, I would say the possibility is greater (if type 2, there is no genetic influence), but still very small. The only other factor that might push up odds of getting Addison’s disease is a family history of Addison’s. In any case, if the doctor really is worried, he can check the 21OH anti-adrenal antibody level. If it is positive that would be significant.



49) Q&A from the March, 2015 NADF newsletter:

QUESTION: I had an 8cm pheochromocytoma removed 2 years ago, and a second one grew but only became functional 16 months back. It showed a 4 times higher than normal cathecholomine output, and BP out of control. The pheo is still really tiny; it has only grown to 1.1 cm last it was checked. The doctors say we should wait for it to grow before removing it, because living on steroids reduces quality of life. The symptoms from pheos however have been very bad. Are there any better treatments you can suggest?

ANSWER: With the occurrence of a second pheochromocytoma producing significant symptoms and blood pressure elevation, surgery remains the best approach. The fact that the second tumor is small may allow the surgeon to attempt a laparoscopic resection of the tumor and try to leave the rest of the adrenal gland intact, preserving adrenal cortical function. Even if that is not possible, surgical Addison’s disease may be preferable to poorly controlled catecholamine excess.



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

QUESTION: doctors are saying that I can have chronic steroid myopathy with adequate replacement of steroids. They say steroids are synthetic, therefore will have side effects no matter how low my dose is. Other Addisonians have said that hydrocortisone mimics normal cortisol production, therefore we should not suffer from side effects. What should I believe?

ANSWER: I disagree. The synthetic aspect is not a factor, although long duration of activity could be, especially with prednisone. Steroid myopathy is generally seen in people on chronic doses of glucocorticoids that exceed the normal physiologic replacement dose. That is why it is a feature of Cushing's syndrome. For most people, doses of prednisone over 5 mg daily or hydrocortisone above 30 mg may put a person at risk for this, as well as the other complications of Cushing's. For individuals with adrenal insufficiency who take replacement doses, steroid myopathy should resolve over time unless other diseases or medications complicate the recovery. If myopathy does persist in the absence of other factors, it may suggest that the maintenance doses are actually still too high, and it might be worthwhile trying a careful reduction in dosage. If prednisone is used, it might be switched to hydrocortisone, with its shorter duration of activity.



51) 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.



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

QUESTION: Having been an Addisonian for 42 years, I have a question about fatigue. When I was working 40 hours a week, cooking and cleaning for a family of seven, I was taking 5 mg. of Prednisone a day and doing fine. After retiring I had increased the dose to relieve arthritis to the point my muscles became weak. Now that I am 80 years old and not real active, I am still taking the 5 mg daily and experience muscle weakness and fatigue. Could these symptoms be caused by more Prednisone than I need at this point? If possible, how should I proceed?

ANSWER: Yes, the use of higher doses of prednisone over many years to treat the symptoms of arthritis could have caused atrophy of the muscles, especially the proximal muscles such as the thighs, leading to difficulty getting up from a chair or climbing stairs. At this point, even 5 mg may be too much if your weight has diminished. It is possible that a slight taper may help with muscle strength, but it will be a slow process. Before reducing the dose, a full evaluation with your doctor is necessary, to make sure there are no other medical problems that might make a prednisone reduction inappropriate.



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

QUESTION: I was on corticosteroids (6 mg Entocort) to treat Crohn’s disease. The course was supposed to be three months, but I found it impossible to taper off at that time. I was diagnosed with a secondary adrenal insufficiency after 15 months on steroids. It took two years to taper off steroids in total; eight months of dedicated effort to get off of them! It sucked. My cortisol is back to normal (19 at last measure, up from 6 or 7 at the lowest), and stimulates up to 31. I’ve been off steroids now for seven months. About how long is the feeling like crap supposed to last?

ANSWER: With the apparent restoration of good adrenal function, there may still be some residual sense of mild adrenal insufficiency symptoms, such as fatigue and low appetite that may remain for a few more months. Keep in mind, however, that symptoms may also be due to the underlying Crohn’s disease, as well as other medical issues. Discuss all this with your doctor, and make sure nothing else is going on.



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

QUESTION: I have Addison’s disease, and my doctor is trying me on a generic for Lyrica. It makes me very dizzy, so I am still on 1 instead of the gradual 4 he has prescribed. Has anyone else used this?

ANSWER: Lyrica is used primarily for painful neuropathy and can cause fatigue and dizziness. It is not prescribed for adrenal disease, but may be used as a part of pain management when there is a coincidental pain issue, especially neuropathy. Side effects must be discussed with the prescribing doctor and adjustments in the dosage may be required.



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

QUESTION: My doctor has told me that dexamethasone is an adequate adrenal crisis care injectable, but you recommend hydrocortisone. Is there a reason one is better than the other?

ANSWER: Dexamethasone has no mineralocorticoid activity, and has a very long duration of action that misses the physiologic diurnal variation. It is only available as 0.5 mg in 5 ml. That is a very big injection if given into a muscle and the dose would be inadequate. I disagree with your doctor for the reasons stated.



56) 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.



57) 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.



58) 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.



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

QUESTION: I’ve been struggling getting a diagnosis from my doctors. I have many symptoms of Addison’s disease, but my doctors say it’s unnecessary to run a cortisol test because my sodium and potassium levels are normal. Is that a good indicator for healthy cortisol levels?

ANSWER: I am disappointed to hear that your doctors refuse to consider Addison's disease in a person with normal sodium and potassium. These levels do not need to be abnormal to consider the diagnosis. They are most likely to be abnormal during an illness or an adrenal crisis. However, a person with Addison's disease may be barely compensated in handling electrolytes, but still have significant signs and symptoms of adrenal insufficiency. If the history and physical exam show any suggestive signs of adrenal insufficiency, a prompt work up is essential and potentially lifesaving.



60) 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.



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

QUESTION: I am 73 years old and was diagnosed with Addison's disease in 2008. Most of this time has been uneventful, as long as I take my medication. Over the past several years, I occasionally have had the sensation of tingling and weakness in my hands, feet and lower legs. It has been happening on a regular basis for the past 2 months, and I am getting concerned.

ANSWER: The tingling in hands and feet are not directly related to the Addison's disease. I suggest further evaluation with your doctor. Among the things to look for would be diabetes and low vitamin B12.



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

QUESTION: I’ve been told by my 14 year old daughter’s doctor that her oddly dilated pupils are the result of the steroids she is taking for her Addison’s disease. Is this a common occurrence?

ANSWER: That would be incorrect information from that doctor. Neither Addison’s disease nor glucocorticoid therapy cause dilated pupils. However, many prescription and over the counter medications do, including antihistamines, decongestants, anti-nauseas meds, plus anti-depressants and some seizure medications.



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

QUESTION: My daughter in law recently had a child, and is suffering from postpartum with a number of symptoms. They include psychosis with hallucinations, delusions, highly abnormal hormone levels that makes her breast milk unfit to drink by her newborn, extreme anxiety, irritability, and fatigue. She is receiving support and treatment for the postpartum but I’m concerned that she may also be suffering from some form of adrenal insufficiency or similarly related hormone issues. Her potassium levels seem to be in a normal range though. Is there a way to best test for the condition given her postpartum?

ANSWER: Some of those symptoms could be related to adrenal insufficiency, but the extent of the work up for possible adrenal insufficiency is prompted by the clinical presentation. I expect that the her doctors found little evidence from the history, physical examination and other laboratory studies to conclude that further work up is not needed. The normal potassium is probably just one of the factors.



64) 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.



65) 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.



66) 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.



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

QUESTION: I wondered if you have any information about the bone building drug Prolia. Three of my doctors want me to try it, but when I googled it, I came up with very bad reviews. I have Addison’s and a recent problem with hypothyroidism, so I certainly don’t need additional problems.

ANSWER: Prolia is an injection given by a doctor every 6 months to treat osteoporosis. Most people with osteoporosis are initially treated with a bisphosphonate, such as Fosamax, Actonel or Boniva. These are given orally, and the major side effect is heartburn and sometimes achiness. They can be safely used for several years before using a holiday for 2 or 3 years. Prolia is usually prescribed when osteoporosis returns after bisphosphonates or if they have not been effective. It is safe and effective for most people. There are no Gl side effects. It can also be used for several years. When researching these drugs, the internet is often misleading, suggesting a significant risk of two very rare side effects: osteonecrosis of the jaw and spontaneous fracture of the femur. It turns out that these are extremely unlikely with any of these drugs, but they are eliminated by taking a holiday for 1 to 2 years after continuous use for more than 7 years. All of these drugs are safe in people with adrenal insufficiency.



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

QUESTION: I had my left adrenal gland removed in November of 2019. The doctor asked for a follow up with a CT scan on the right adrenal gland, and showed it enlarged. What treatment options would there be for this?

ANSWER: The proper response depends on the type of adrenal disease that warranted the original surgery. If you had a benign nonfunctioning adrenal adenoma removed, hyperplasia of the remaining gland would be normal. If you had Cushing’s syndrome with nodular hyperplasia, then the remaining gland could have the same pathology. You would need new baseline studies of adrenal function to assess the hormonal output ofremaining gland. If it is not producing excess cortisol and the size is less than 3 cm, it should be left alone.



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

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

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



70) 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.



71) 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.​



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

QUESTION: I had both adrenal glands surgically removed in September 2020 and now have adrenal insufficiency, which is treated with hydrocortisone and fludrocortisone. In October 2021, I learned that I had sudden onset cirrhosis of the liver, which no one can seem to explain. I’ve never used illegal drugs, have no history of hepatitis, and drink very rarely (1-2 drinks a few times a year before my diagnosis. I don’t drink at all now). Could the steroids possibly have anything to do with it?​

ANSWER: Replacement steroids used to manage adrenal insufficiency do not cause any type of liver disease. The most common cause of cirrhosis is not alcohol. The most common causes are fatty liver and non-alcoholic steatohepatitis or NASH. Your doctor will need to do a thorough evaluation, including ruling out old infection from viral hepatitis. Imaging of the liver may include a new technique that measures the amount of fibrosis. A liver biopsy may be needed. Management should be with a gastroenterologist who sees a lot of liver disease.​



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

QUESTION: Is there a way to know if I am on the correct dosage of Florinef? I have PAI (since 1988) and wonder is there a blood test? Or is it if I feel these symptoms mentioned in your presentation that could indicate I am on too low a dose & talk to my doctor?

ANSWER: Fludrocortisone is a replacement for aldosterone, the adrenal hormone that signals the kidneys to retain sodium and thereby increase blood volume and blood pressure. While retaining sodium, it causes the excretion of potassium into the urine. In assessing the proper dosage of fludrocortisone in people with primary adrenal insufficiency, we look at the following: blood pressure - is there a postural drop on standing, is the BP too high; is the serum potassium normal or too high; is there ankle swelling from retention of too much sodium; and we have the very useful blood test for plasma renin. Renin is made in the kidneys, reflecting blood volume. If the volume is too low, renin is elevated. If the volume is too high, renin is suppressed. Once an adjustment in fludrocortisone dosage is made, all these parameters should be assessed again at the next visit.



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

QUESTION: Does anything (i.e., meds, etc.) impact plasma renin test? My results (normal or low) do not seem to match up with symptoms and doctors have not been much in favor of me taking fludrocortisone. I am currently taking 0.05mg daily.

ANSWER: Diuretics will increase renin, which is why they are inappropriate in Addison's disease, since they reduce blood volume. If your renin is normal to low, blood volume on your current dose of fludrocortisone is adequate. The dose of 0.05 mg is a common dose, along with appropriate hydrocortisone, which also has mineralocorticoid activity. If your blood pressure is high, the low renin suggests that you may be able to reduce the dose of fludrocortisone.



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

QUESTION: I was diagnosed with Addison's Disease in 2004 and Hypothyroidism in the early 90s and my medication is stable for both diseases. I have been on a daily dose of 10 mg DHEA since 2005. I started experiencing hair loss last fall and have since been diagnosed with female pattern hair loss. I stopped the DHEA 10 mg a few months ago. I'd like to try to take Spironolactone for the hair loss as my dermatologist recommended this, but know this medication affects potassium. Is it safe for a woman with Addison's disease to take Spironolactone for hair loss?

ANSWER: Spironolactone is not a good idea in Addison's disease. It is a mild diuretic and does elevate potassium. Your doctor should check to see if your serum testosterone is high normal or elevated. If it is, a better medication than spironolactone would be finasteride. It blocks the metabolism of testosterone but does not elevate potassium. As a woman, the dose is a fraction of the dose for men with enlarged prostate. I usually use 2.5 mg every other day. Also, add biotin, a safe vitamin that is good for hair and nails.



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

QUESTION: I have SAI and was diagnosed in 2009. My ACTH was very low. Although it is said that with SAI your sodium levels don't drop and you don't get a tan, well for some reason my sodium and potassium levels drop dangerously, I must take electrolytes and potassium tablets, and I have a tan which especially gets darker when low on cortisol or pre crisis. This has been a puzzle for my doctors. I wonder if anyone else is like me?

ANSWER: The hyperpigmentation seen in primary adrenal insufficiency is due to the overproduction of melanocyte stimulating hormone in association with the overproduction of ACTH in the pituitary. The MSH stimulates the melanocytes in the skin, causing a darkening. It is not really a tan, which would be pronounced in sun exposed areas. The hyperpigmentation of PAI is all over, including areas not exposed to the sun, and includes the gums in the mouth. If a person with SAI gets a tan, it is due to something else, perhaps other medications that can cause photosensitivity. There are many medications that do that. The tendency to have both low sodium and potassium suggests water overload, medication side effects, or hypothyroidism.



77) 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.



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

QUESTION: My doctor is prescribing Paxlovid for COVID. When I check it out online, I read that it alters the absorption of Cortef and Fludrocortisone. My doctor does not understand Addison’s, so he may not be aware of how crucial that absorption is. What is NADF advising regarding Paxlovid with Cortef and Fludrocortisone? I just read NADF article “FDA Approves Antiviral Pills……” along with its links. It does not address this issue.

ANSWER: Paxlovid is appropriate for individuals with adrenal insufficiency who have Covid. It has a minor effect on glucocorticoid metabolism, especially dexamethasone and prednisone, but not hydrocortisone or fludrocortisone. Even then, the effect is to raise the level, which is beneficial in the setting of symptomatic Covid. Individuals with adrenal insufficiency should increase their dosage of glucocorticoids to handle the stress of the acute illness. Any effect during the 5-day course of Paxlovid is helpful, not harmful. Since there are many other drugs that can interact with Paxlovid, they should be reviewed by the physician and pharmacist.



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

QUESTION: I am having trouble obtaining Greenstone hydrocortisone, and my doctor is prescribing prednisone instead. What are your thoughts?

ANSWER: Before switching to prednisone, I suggest trying to get Cortef brand hydrocortisone while waiting for the Greenstone supply. Prednisone can be used, but it has a different duration of action and has very little mineralocorticoid activity. If you do use it, you may need to increase the dose of fludrocortisone.





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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