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Please enter your search term and hit the search button. This will search 333 Question and Answer items published in the NADF newsletter between January 2004 and Present.

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Found 40 matches in 26 Q&A's.

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

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 Flofinef (fludrocortisone) because this replaces the mineralocorticoid aldosterone, which is lacking along with cortisol in primary disease. Flofinef causes sodium retnetion 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.

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

QUESTION: I am trying to get information about adrenal adenomas�functioning 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.

3) 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.

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

QUESTION: I have severe adrenal deficiency. I have been placed in the hospital several times because of my condition. When they administer the IV of isotonic saline, how much should they give me? I have been given a different amount each time I have been in the hospital. Any information you can give me would be most helpful.

ANSWER: The amount of IV saline given for an adrenal crisis varies with the degree of dehydration, the severity of the signs of adrenal insufficiency, and whether there are other medical conditions, such as heart disease that might limit the ability of the body to utilize the fluid. Most of the time, if there are no other disorders, one liter of saline should be given along with 100 mg of hydrocortisone within the first hour, then 100 to 200 ml per hour after that until blood pressure and electrolytes (sodium and potassium) are back to normal.

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

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

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

6) Q&A from the June, 2006 NADF newsletter:

QUESTION: Hello. I have a question I can NOT get a straight answer to! Can you please help? My registered dietician friend says that it will be almost impossible for me to lose weight (as measurable on the scale) due to the fact that the Florinef I take (0.5 of a tablet in AM) causes me to retain water. She said I have to have my body composition checked to see if my body fat reduces by dieting. But in any case, even if my body fat reduces, I will still weigh the same due to water retention. Is that true?

ANSWER: Your nutritionist is mistaken. Florinef (fludrocortisone) does cause fluid retention by helping the kidneys hold onto sodium and excrete potassium. The purpose of the medication is to help the Addisonian maintain a normal blood volume and avoid low blood pressure and any fall in blood pressure on standing that would result from the deficiency in the hormone aldosterone caused by the Addison's disease. Florinef replaces aldosterone. In contrast to hydrocortisone, the Florinef does not cause any fat production. If you are on an ideal dose of hydrocortisone as well as Florinef, you can and will lose weight if you diet and exercise. If you take an excess of Florinef, you may have excess fluid retention, resulting in ankle swelling and high blood pressure.

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

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

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

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

QUESTION: How quickly can changes to concentrations of sodium and potassium occur in a body?

ANSWER: sodium and potassium changes can occur in minutes in the setting of acute illness in an Addisonian.

9) 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.

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

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

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

11) Q&A from the March, 2009 NADF newsletter:

QUESTION: Recently my Solu-Cortef injections expired. Per NADF's e-mail of July 6, 2007, Dexamethasone sodium Phosphate was recommended as a substitute for solu-cortef. So last week I got my prescription renewed with Dexamethasone, because it doesn't need complicated mixing like solu-cortef. However, last evening I was going through old NADF newsletters. In a 2003 Q&A to Dr. Margulies, he replied that Dexamethasone is not a great substitute for hydrocortisone because: �it contains no mineralcorticoid activity (the only reason to take an injection of steroids) it would not provide enough stimulation to blood pressure." Should I get a new prescription for solu-cortef? Is there any injectable solution that is good for Addison's emergency that does not need mixing: this is a very difficult process for lay persons. I would appreciate your reply. Thanks for all the years of NADF and it's support!

ANSWER: I haven't changed my mind about dexamethasone. For emergencies, Solu-Cortef and/or the other brand of hydrocortisone are superior because it contains mineralocorticoid and well as glucocorticoid activity and therefor helps to maintain blood pressure.

12) 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.

13) Q&A from the March, 2011 NADF newsletter:

QUESTION: Can you explain your term �salt waster� if you explained it on your web page I missed it, I think you just labeled it without explaining what it means...it sounds like you are saying that salt is being pushed out of the body due to a lack of aldosterone production...is that correct? And if so does the salt leave the body through the bloodstream then kidneys?

ANSWER: People who have Addison�s disease are salt wasters due to the deficiency of aldosterone. This hormone signals the kidneys to retain sodium (salt) to maintain a normal volume of fluid in the blood. With a deficiency, Addisonians �waste� too much sodium from excretion in the urine, have a lower blood volume and lower blood pressure.

14) 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.

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

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

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

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

QUESTION: I have secondary adrenal insufficiency, and for the last 10 years I have found that in a pinch, squirting the hydrocortisone solution of my crisis care injection into my mouth and swallowing it works if I can't inject myself with the hypodermic needle. Is this a good way to treat an Addisonian crisis?

ANSWER: I do not recommend this approach. Since the purpose of an emergency injection is to provide a high dose when oral medication would be ineffective (especially if the person is vomiting), giving the injectable form into the mouth is not more effective than taking more pills by mouth. I suppose the injectable forms, like Solucortef would be absorbed, since it is a solution of hydrocortisone in sodium succinate. But if the individual is vomiting, the amount absorbed would still be uncertain. I would still suggest increased oral steroids for stressful events, IM hydrocortisone for emergencies when oral cannot work, and ER visits for IV saline and hydrocortisone when those treatments do not work. It is possible that squirting Solucortef into the mouth may help if there is no other steroid available, but it is not the ideal treatment.

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

QUESTION: I was diagnosed with Addison�s in 1994. It�s been noted in recent years that my bloodwork is showing slowly decreasing potassium results. It used to read at 4.0, but last time was at 3.5, a little below the bottom of normal range. That last time, my sodium was also low end of normal. Is there something I should be considering to explain this?

ANSWER: The most likely cause is a very slight imbalance in mineralocorticoid intake vs fluid intake. Aside from just looking at the electrolytes, look at the total picture. Look for evidence of a slight excess of mineralocorticoid, such as a slight increase in blood pressure, slight ankle swelling and check the plasma renin (if it is low, it suggests too much mineralocorticoid). Remember that mineralocorticoid effect comes primarily from fludrocortisone, but also from hydrocortisone. Also, look for hypothyroidism, since this can contribute to increased water and dilution of sodium and potassium. Finally, look at any other medications that might have changed.

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

QUESTION: I�ve read in an article that altitude sickness medication is bad for anyone with Addison�s disease, because it interferes with the sodium and potassium balance in the body. Is that true?

ANSWER: The most common drug used to prevent altitude sickness does alter the kidney metabolism of electrolytes, making it risky in Addison�s disease. If symptoms occur, a slight increase in the dosage of hydrocortisone is helpful.

19) 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.

20) Q&A from the December, 2018 NADF newsletter:

QUESTION: I have primary adrenal insufficiency. I�ve also been having issues with acidosis and bicarbonate drops quickly at times. I take potassium citrate. I was previously on sodium bicarbonate, but it didn�t seem effective. Maybe the potassium is part of the problem? I see a nephrologist who is focused on treating, but not diagnosing the problem.

ANSWER: The presence of acidosis suggests a primary renal disorder. Adding potassium is tricky because of the primary adrenal insufficiency. I would defer to the nephrologist who should have an understanding of the mechanism of the acidosis. If there is uncertainty about the cause, perhaps another nephrology opinion would be warranted.

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

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

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

22) 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.

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

QUESTION: Is it safe to take elderberry and hydrocortisone? Not necessarily at the same time but, in the same day. Is it safe to take elderberry daily while being steroid dependent?

ANSWER: I have no experience with any of my patients taking elderberry. It has been promoted for its immune support, but there is not much scientific evidence of a real benefit. It is probably safe for most people, but I am concerned about one of its properties - it is a mild diuretic. That may make it questionable for people with primary adrenal insufficiency since it may reduce sodium and blood pressure. If an individual does try it, monitor for side effects, including dizziness and nausea. If any side effects occur, stop it.

24) 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.

25) 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.

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

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

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

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

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

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