Written by Paul Margulies, M.D, F.A.C.E., F.A.C.P. Medical Director, NADF.
Clinical Associate Professor of Medicine, New York University Medical School.
Q&A from March, 2004
Question: Does taking hydrocortisone affect my cholesterol?
Answer: High dose steroids can elevate cholesterol, as well as blood sugar. If cholesterol remains high even on normal replacement doses, then it should be treated with medication.
Question: My adult son developed Addison’s disease not too long after falling off a ladder while painting his house. Is there any chance this could be the cause of his Addison’s.
Answer: Severe injury that causes hemorrhage into both adrenal glands can cause Addison’s disease. It is more likely to occur in people with abnormal clotting factors that make them more susceptible to hemorrhage and bleeding. There have been reports of transient as well as permanent adrenal insufficiency from hemorrhage. The best way to document it is a CT at the time of diagnosis, which will show enlargement of the adrenals from the hemorrhage. Autoimmune Addison’s would show tiny adrenals. Also, a blood test for antibodies to 21-hydroxylase is useful to rule out autoimmune Addison’s and would be negative if caused by the trauma.
Question: I recently “met” another Addisonian via an Internet chatroom. This person does not take Florinef or fludrocortisone. Shouldn’t all people with Addison’s take Florinef?
Answer: Almost everyone with Addison’s disease (primary adrenal insufficiency) should take some amount of Florinef (fludrocortisone) because this replaces the mineralocorticoid aldosterone, which is lacking along with cortisol in primary disease. Florinef causes sodium retention and potassium excretion in the kidneys and helps to maintain blood volume and blood pressure. There is a small amount of mineralocorticoid activity in hydrocortisone, but usually not enough. Therefore, when Addisonians try to replace with only hydrocortisone, they often are forced to take too much hydrocortisone in order to keep blood volume up, resulting in weight gain and other features of cortisone excess. The dose of Florinef can vary from as little as 1/2 tablet to as much as 3 or 4 tablets daily. People who have secondary adrenal insufficiency from pituitary disease or from long term steroid use usually do not need Florinef because they usually do not have an aldosterone deficiency. There are, however, some exceptions when Florinef is needed to maintain blood pressure and prevent potassium elevations.
Q&A from June, 2004
Question: There are some people on an Addison’s Listserve who talk about taking potassium supplements. Aren’t Addisonians supplosed to be careful of too much potassium?
Answer: You’re right. One of the common problems I run into is the assumption that commercial beverages like Gatorade are appropriate for Addison’s. They are not, patricularly because they have too much potassium. Addionsonians should add extra salt, but not potassium, and water in the summer, in hot weather and when exercising.
Question: There are some hyrocortisones manufactured that can be administered via enema. Would this by any chance be an option for someone with moviting instead of the infection?
Answer: No, those are meant to treat inflammatory bowel disease, like ulcerative colitis. The exact amount that is absorbed into the blood is unreliable and inconsistent, so it is not appropriate for adreal insufficiency.
Question: I am a member of an internet message board and they have been talking about “corisol day curves”. What are your thoughts on this medical procedure?
Answer: I have never used it in my clinical practice. It is very impractical to get blood studies throughout the day, the results are highly variable and the interpretation for adjustment of medication doses is questionable. I do still endorse the use of the lowest doses of glucocorticoids that prevent adrenal insufficiency symptoms and allow for a good sense of well being and normalization of all the other clinical and laboratory features that are affected by adrenal insufficiency.
Question: Can an athlete continue to perform at the same level with Addison’s Disease with proper amounts of medication?
Answer: Although I am not aware of any professional athletes with Addison’s disease, certainly many addisonians can do strenuous exercise and participate in sports of all types. Each person needs to develop his or her own sense of balance between exercise and steroid dosing by trial and error. Extra fluids, slat and calories are needed, especially in warm climates.
Question: Is there any known connection between Addison’s and heart problems?
Answer: There is no direct effect of Addison’s disease on the heart. However, untreated or inadequately treated Addison’s is associated with low blood pressure. If underlying heart disease is present, adrenal insufficiency can exacerbate symptoms of heart failure.
Q&A from September, 2004
Question: I am trying to get information about adrenal adenomasófunctioning and non-functioning. I recently was diagnosed with an adrenal mass which they say is an adenoma and any information that you can send to me will be greatly appreciated.
Answer: Adrenal masses are very common, usually found as an incidental finding on a CT or MRI while looking for other diseases. Most adrenal nodules are benign and non-functioning (no excess hormone production). The basic question that must be answered is whether it needs to be surgically removed. Surgery is indicated if the nodule is large (greater than 4-5 cm), growing, or if it is functioning. The basic endocrine work-up for function includes a full history and physical to look for high blood pressure or any signs of cortisol excess (Cushing’s syndrome); blood tests for potassium, sodium and glucose; plasma metanephrines; and an overnight dexamethasone suppression test. If all these are normal and the nodule is small, a follow-up imaging with CT or MRI should be performed in 3-6 months to see if it is growing. Again, most of the time surgery is not needed.
Question: My husband was diagnosed with Addison’s Disease at 18 months. He is now 24 and we are considering children in the future. We have concerns about the effects of his disease and medication on fertility. Do you have any advice? Should it affect whether or not he is fertile?
Answer: Addison’s disease itself does not affect fertility for men or women. However, if there are other autoimmune endocrine disorders associated with it, this can include an autoimmune gonadal insufficiency. This is usually seen in women, there is not much literature on men. The age of onset is surprising, and raises the question about the cause of his Addison’s disease. If it is due to a congenital defect, it may not be autoimmune. If it is really congental adrenal hyperplasia, then it is genetic and both partners should have genetic screening. If it is adrenoleukodystrophy, he will have serious neurologic problems by now, and will have testicular and other gonadal problems. In any case, it is easy to check his sperm count and quality, and if there are any genetic issues, get genetic testing and counselling.
Question: Would physical therapy ever be prescribed for the lower back pain associated with Addison’s symptoms? How can you differentiate a spinal injury from Addison’s-type muscle pain?
Answer: Back pain is seen in some people with untreated Addison’s disease or during an adrenal crisis. It should not be considered a chronic feature of Addison’s disease. Therefore, if persistent back pain is present in an addisonian who is on appropriate replacement steroids, other causes should be sought and treated, with physical therapy, pain management, etc.
Question: Could being on hormone therapy (estrogen, testosterone, progesterone) affect the outcome of an ACTH test?
Answer: The answer to the question is no. None of the gonadal hormones affect the ACTH-adrenal axis, and therefore the standard ACTH stimulation test is not affected. The one exception is the use of Megace, a potent progesterone used to improve appetite in cancer patients. This drug can suppress adrenal production of cortisol.
Q&A from December, 2004
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.
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.
Question: I am having trouble with my cortisone replacement not holding me, and I am terribly fatigued. My husband is an alternative MD. He said my IGF levels are very high, and he is concerned about hyperplasia or adenoma of the pituitary. Is there a way to find out if there are such scenarios that might be contributing to my cortisone being rendered ineffective?
Answer: IGF-1 is a hormone produced in the liver, stimulated by growth hormone from the pituitary. The most common cause of an elevated IGF-1 is a pituitary tumor producing excess growth hormone. This is called acromegaly. This disease causes bony distortions in the skull, face, hands and feet, elevated blood pressure, blood sugar, increased sweating, and can lead to cardiac enlargement and heart failure. If this is occurring in the setting of preexisting secondary adrenal insufficiency, it can certainly lead to symptoms that might be interpreted as inadequate cortisone responsiveness. If acromegaly is diagnosed, surgery is usually the best initial treatment. Some medications that inhibit growth hormone production or effect, as well as radiation therapy may have a role.
Question: I have Addison’s disease and will traveling extensively overseas next year (perhaps as long as a year). Would it make better sense to buy all my medications before leaving (with the risk of loss of luggage) or buy it in smaller amounts as I travel? Can I trust overseas pharmacies?
Answer: It would be easier for you if you buy all, or as much as you can, of your medications before you leave the United States, while keeping enough medications on your person to tide you over until replacements can be acquired, in case of luggage delay or loss. Please carry your emergency cortisol injection with you on flights, as well as a letter from your endocrinologist stating that you need to carry it, in case questions are raised. We also recommend you carry a copy of our Emergency Treatment Instruction Sheet with you at all times, in case of need. Travel safely, and bon voyage.