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Found 82 matches in 42 Q&A's.


1) 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.



2) 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.



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

QUESTION: My daughter was recently diagnosed with Schmidt's syndrome. In addition, she has had a headache for over a year. The headache gets somewhat better at times, and is worse at others, but never goes away. We still do not have a diagnosis on the headache, although tension seems to be a significant contributor. Due to the headache pain and the fatigue associated with Addison's, she has become depressed. Could the Addison's and Hashimoto's be causing her headache? She had scoliosis surgery a year ago in November and now has two Titanium alloy rods in her back. Could a metal allergy have caused the onset of Addison's? She developed low blood pressure and orthostatic intolerance two weeks after surgery. Could this have actually been an Addison's crisis and we are just fortunate that she still was making enough Cortisol to get through the surgery? Could a difficult menstrual cycle be stressful enough to require an extra 5mg of cortisol?

ANSWER: Depression is common in individuals with inadequate treatment of both adrenal insufficiency and hypothyroidism, but it is also common in the general population and in the setting of chronic illness. Headache can also be seen in hypothyroidism. Metal allergy is not a known cause of adrenal insufficiency. Certainly, hypotension after surgery may have been a sign of adrenal insufficiency at that time. Yes, menstrual cramps can be severe enough to require extra steroid treatment. Try a dose of ibuprofen at the onset of the cramps to minimize the pain.



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

QUESTION: I was wondering it there is a healthy weight maintenance diet that people with Addison's should follow, especially when hypoglycemia is a concern. If you could send me any information that would be wonderful.

ANSWER: The best diet for people with Addison's disease is a well balanced nutritious diet with three meals per day, adequate complex carbohydrate and protein, and adequate salt. If hypoglycemia is frequent, there is probably a need for a higher dose of hydrocortisone, but adding small snacks between meals can help. Addisonians must drink enough water to avoid dehydration and low blood pressure, and increase fluids with exercise or in hot weather. Maintaining a normal weight is important for everyone, including people with adrenal insufficiency. Beyond these generalities, there is no specific “Addison's" diet regimen.



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

QUESTION: I had Addison's for 11 years, and now have hypothyroid condition. Adding Synthroid, I am getting CRAZY. Whenever I have to raise steroids (infection, stress, etc.) it causes me to go very hypothyroid. Then when I lower the steroids & taper down, I go very hyPERthyroid!!"

ANSWER: As you know, hypothyroidism and Addison's disease will commonly occur together, and there is usually no conflict. Each replacement must be handled separately. Typically, hypothyroidism will start with partial insufficiency and a mild replacement dose, but will usually slowly progress with further loss of thyroid function, and the replacement dose will increase to fill the gap. In contrast, when Addison's disease is diagnosed, a full replacement dose of glucocorticoid and mineralocorticoid is necessary right away, and the adjustment in dose is based on body size, activity, and stress levels in daily living. Doses of glucocorticoid, such as hydrocortisone, have only a minor affect on thyroid hormone levels. Often, high doses make one feel “hyper" without necessarily changing blood levels, and may be followed by a feeling of let-down that feels like “hypo". On the other hand, since higher doses of hydrocortisone are given for stressful illnesses that may cause fatigue that feels like hypothyroidism, and are then relieved at the time the steroids are tapered, which may contribute to the inverse symptoms you describe. The best way to check is to look at the blood levels, especially of TSH as a guide to thyroid replacement.



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 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.



8) 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.



9) 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.



10) 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.



11) 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.



12) 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.



13) 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.



14) 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.



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

QUESTION: Have you encountered anyone with Addison’s who also has Graves Ophthalmopathy (Thyroid Eye Disease)?

ANSWER: Autoimmune thyroid disease is very common in association with autoimmune Addison’s disease. In our NADF survey we found 76.7% had thyroid disease (69.6% hypothyroid and 7.1% hyperthyroid). We presumed that the hyper people had Graves’ disease. The incidence of thyroid eye disease, with exophthalmos and eye symptoms is probably the same in individuals with only Graves’ vs those with both Graves’ disease and Addison’s, but no one has actually published data on this. In my personal experience, I have seen a few who have both and did develop thyroid eye disease. The management of the eye disease varies with the severity. Most stabilize and slowly improve over time once the hyperthyroidism is treated. Severe cases require high dose steroids, radiation, surgery, or a combination of these treatments.



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 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!



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

QUESTION: I am a 69 year old woman who was diagnosed with Addison’s disease 7 years ago. My concern now is that my hair is thinning due to the steroids I take to treat my conditions. I am using evening primrose oil and biotin daily, but it isn’t helping. Can you give me some advice?

ANSWER: Scalp alopecia, or hair loss, can be due to many factors. It is not a specific sign of adrenal insufficiency, but if there were intervals of needing high steroid doses to cover illness, that could contribute. It can occur with thyroid disease in the setting of either hypothyroidism or hyperthyroidism, so rechecking the blood test for thyroid function is important. Alopecia can also occur as a genetic trait, as a result of severe dieting and weight loss, with elevation of androgens, especially if accompanied by increased facial hair growth or acne. If no specific cause is found, the biotin is a good idea. I suggest 5,000 mcg per day. Topical Rogaine can be added if needed.



19) Q&A from the December, 2014 NADF newsletter:

QUESTION: I’ve read on the internet that prednisone or other steroids can suppress your thyroid, which is worse for people with hypothyroidism. Is this true?

ANSWER: Glucorticoid treatment for adrenal insufficiency does not block metabolism of thyroid hormone.



20) 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.



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

QUESTION: My sister, who is 76 years old and has been living with Addison's since she was 13, has recently been showing signs of dementia. According to Medline on the internet, metabolic dementia can be caused by Addison’s. Is this true and, if so, what can we do about it?

ANSWER: Although Addison's disease can contribute to dementia if undiagnosed or untreated, it would be an unlikely cause. If she has been well treated all these years, I would consider Alzheimer's disease as a likely primary cause. I suggest a neurologic consult to rule out other disorders, thyroid function tests to rule out hypothyroidism, and supervision of medication compliance to ensure proper steroid replacement.



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

QUESTION: Someone on one of my support forums gave me your site to contact because of recurring issues with ACTH levels. Just a bit of history for you so that you can help me as much as possible. I am a 43 year old female that was diagnosed with Cushing's syndrome due to both an adrenal adenoma as well as a pituitary adenoma. In 2009 I had two surgeries on my pituitary to remove the adenoma. When ACTH levels were not suppressed they did a bilateral adrenalectomy. I was doing great up until late this year. Pigment started getting really dark, fatigue has sat in to a great extent, stomach pain, diarrhea, vomiting on many of the days out of a week. Headaches have returned with some double and sometimes blurry vision. I am not losing weight again, and my mood swings are back, and I am very depressed. Endo did checks on my test and the first one was 496 at 9:00am and the second test he did was a suppression test, with levels only going down to 240 at 8:00am. I do not know what to demand at this point. I am once again feeling horrible and only know that as time goes on I will be worse. Can you please suggest a plan of action for me?

ANSWER: The elevated ACTH levels suggest that she may be developing Nelson's syndrome. This is a complication of the management of Cushing's disease (pituitary origin) with bilateral adrenalectomy. The remaining pituitary adenoma that was causing the Cushing’s, and was unsuccessfully resected, may now be growing and making larger amounts of ACTH than ever. If that is the diagnosis, it can be quite serious if not treated. The pituitary tumor may grow rapidly, causing compression of the remaining pituitary gland, leading to deficiencies of other pituitary hormones. The effect can be hypothyroidism, growth hormone deficiency, hypogonadism and sometimes diabetes insipidus. Also, if the tumor is large, it can compress the optic chiasm and cause loss of vision and headaches. The endocrinologist should evaluate all of these possibilities with lab tests, visual fields and a repeat pituitary MRI. If Nelson’s syndrome is diagnosed, therapy with medication (cabergoline and Sandostatin), radiation therapy or repeat pituitary surgery to remove the tumor can be successful. Appropriate replacement treatment for the surgical Addison's disease with hydrocortisone and fludrocortisone is essential. If hypopituitarism is present, replacement of the missing hormones is also a vital part of the management.



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

QUESTION: I have Addison’s disease and hypo-thyroidism. Is it safe for me to be a live kidney donor for my brother?

ANSWER: Neither Addison’s disease or hypothyroidism would automatically eliminate a person from being a donor. Eligibility would depend on the general good health of the individual and any history of instability in health matters, such as blood pressure. The safety of undergoing kidney donation surgery is the same as other major surgery procedures.



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

QUESTION: Is it possible to have a low aldosterone level (close to the bottom of the scale) and low renin, but to have normal cortisol, electrolytes, and ACTH test? I suffer from low blood pressure. Can low aldosterone cause swelling of the submandibular salivary gland (the swelling is non-inflammatory, it is painless, bilateral and permanent), or abnormal fat distribution in the upper body? My lower body doesn't look swollen. And can low aldosterone somehow cause multiple aphtea/erosions/ulcers in the small intestine (that isn’t Crohn’s or Celiac disease)?

ANSWER: hyporeninemic hypoaldosteronism is fairly common. It is caused by a defect in the kidneys. The signs are low blood pressure, a further drop in blood pressure on standing, and high potassium. In contrast to Addison's disease, people with this syndrome have normal levels of cortisol and ACTH. The treatment is replacement fludrocortisone (Florinef ) without the need for hydrocortisone. Many people with this syndrome have diabetes mellitus. Even if blood sugars are normal, the physical features of insulin resistance (the major cause of adult onset diabetes) include increased body fat in the middle of the body as well as swelling of the salivary glands. It would not generally include ulcers or changes in the small bowel.



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

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

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



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

QUESTION: I have secondary adrenal insufficiency. My adrenal glands are small and produce cortisol with proper diet and care. Stress will put me into crises. When I go into crises I lose all muscle control so it is a race of time to get me to the ER. I was born with only the right thyroid, and now have nodules on it. I have hypothyroidism and tried armor and levothyroxine, which I’ve had allergic reactions to. My father had thyroid nodule cancer. If I need to have the right thyroid removed because of cancer, is their medication for me to take for the thyroid that will not damage my adrenal glands?

ANSWER: There are mistaken concepts about adrenal insufficiency as well as thyroid disease. The simple answer to the question is that thyroid hormone in the form of levothyroxine would be necessary if the remainder of the thyroid is removed. Levothyroxine cannot be allergenic. If allergic symptoms occurred in the past, it was to the inert ingredients in the tablet. One way to avoid that is to use a liquid form of levothyroxine in the brand Tirosint®. Thyroid hormone cannot damage the adrenals.



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

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

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



28) Q&A from the June, 2018 NADF newsletter:

QUESTION: I have secondary adrenal insufficiency, but my adrenal glands produce enough cortisol if I manage my stress and health. I only need hydrocortisone in a crisis. I have hypothyroidism, and only my right thyroid gland, but it has developed nodules and it may need to be removed. I think I’m allergic to levothyroxine, so I was wondering if there is a medication for me that will not damage my adrenal glands?

ANSWER: There are some mistaken concepts about adrenal insufficiency as well as thyroid disease. The simple answer to this question is that thyroid hormone in the form of levothyroxine would be necessary if the remainder of the thyroid is removed. One cannot be allergic to levothyroxine. If allergic symptoms occurred in the past, it was to the inert ingredients in the tablet. One way to avoid that is to use a liquid form of levothyroxine like in the brand Tirosint. Thyroid hormone cannot damage the adrenals.



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

QUESTION: Q.I have a question for you about your thoughts on chronic urticaria and autoimmune thyroid disease. I personally have gotten hives from various ingested items since I was 18 years old. My triggers, the best I can figure, are salicylic acid, tetrazine (yellow #5 food die), and sulfites. Since I have figured out the sensitivities, I just assumed I was just physically sensitive to stuff. (Talcum powder makes my eyes twitch.) I found on the internet that they are connecting autoimmune thyroid disease with chronic urticaria. I am suspicious about that connection. What are your thoughts?

ANSWER: There can be a connection between chronic urticaria and autoimmune thyroid disease, especially Hashimoto’s thyroiditis. In most cases, the dermatologic symptoms appear or are worsened when thyroid function is abnormal - either too high or too low. Adjusting the thyroid hormone dosage can improve the situation, but does not necessarily make it resolve. I also often recommend using a hypoallergenic form of thyroid hormone, such as Tirosint, which is a gel cap with no solid ingredients. Even with these strategies, it is usually necessary to use antihistamines, and sometimes a temporary course of high dose glucocorticoids.



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

QUESTION: I have been searching for information on how long it can take for Addison’s symptoms to develop to the noticeable level and have only found that onset is slow. What is slow? Is it possible to have mild Addison’s or a progressively developing Addison’s that develops over decades?

ANSWER: Unfortunately, there is not much data on this. Certainly, it can progress in a subclinical manner for a few years. I would doubt that it would remain subclinical for decades, but it is possible. A related autoimmune disorder like Hashimoto’s thyroiditis will often progress from normal thyroid function to symptomatic hypothyroidism over very many years.



31) 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.



32) 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.



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

QUESTION: I am an adult who struggles with extremely low aldosterone. I am currently on Florinef but my levels are still at the lowest point on the range when blood work is done. I struggle with extreme fatigue, have paralysis sometimes (full body except for the head) and tremors/shaking once the paralysis lifts. I’ve dealt with this for years.

ANSWER: Aldosterone is the adrenal hormone that promotes salt retention and support of blood volume and blood pressure. When it is deficient, there is a tendency for low blood pressure, a further drop in blood pressure on standing (postural hypotension), and usually an elevated serum potassium. There are two major causes of low aldosterone: One is primary adrenal insufficiency (Addison’s disease), where the adrenals are destroyed and there is a loss of cortisol as well as aldosterone. The other is hyporeninemic hypoaldosteronism, caused by a kidney defect or disease where renin is deficient and cannot stimulate the adrenals to make aldosterone despite low blood volume. This defect is often seen in diabetes, but occurs in other kidney disorders as well. In this type, the adrenal glands are normal. The diagnosis is made by checking plasma renin and aldosterone at the same time. In Addison’s disease the renin is high, and the aldosterone is low. When both are low, it is hyporeninemic hypoaldosteronism. There are also some very rare cases of isolated aldosterone deficiency without cortisol deficiency. All types are treated with fludrocortisone because it is the only mineralocorticoid we have. The response is assessed by monitoring the blood pressure changes with posture, potassium and looking for excess replacement that can cause ankle swelling or an elevated blood pressure. Checking the level of aldosterone itself is useless because fludrocortisone is not measured in the assay. From your complaints about paralysis, I suspect that something else is going on besides hypoaldosteronism. A thorough neurologic evaluation is needed.



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

QUESTION: I have autoimmune Addison’s disease, and was diagnosed with hypothyroidism 18 years ago. I was tested for antibodies recently, and came up negative for the antibodies that would destroy my thyroid. Does that mean my hypothyroidism isn’t autoimmune related? Is there another link or cause connected to Addison’s?

ANSWER: Most people with hypothyroidism have autoimmune (Hashimoto’s thyroiditis) hypothyroidism unless they have had surgery, congenital hypothyroidism or (rarely these days) a history of radiation to the neck for lymphoma. When the hypothyroidism exists along with autoimmune Addison’s disease, it is especially likely to be autoimmune. Thyroid antibodies tend to diminish or disappear over time, so with an 18-year history, this is likely autoimmune. It is also important to mention that many people with autoimmune hypothyroidism never have a positive blood test. The assumption here is that the lymphocytes within the thyroid make enough antibodies to injure the thyroid cells, but not enough to be see in the blood stream. We call this “seronegative Hashimoto’s thyroiditis.” It is quite common.



35) 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.



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

QUESTION: I would appreciate any advice about adrenal insufficiency that is caused by opioid use, especially how it might affect treatment compared to other cases of AI.

ANSWER: Opioid-induced adrenal insufficiency is quite common. It has been estimated that between 9 to 29% of chronic opioid users develop some degree of adrenal insufficiency. The mechanism is suppression of the hypothalamic-pituitary responsiveness to the need for cortisol, so there is a relative deficiency of ACTH stimulation to the adrenals, resulting in inadequate cortisol production. This can produce a full spectrum of adrenal insufficiency symptoms, from negligible to full adrenal crisis if there is an acute precipitating illness or injury. The diagnosis is confirmed with a blunted cortisol stimulation test, but simply finding a low AM serum cortisol with a low ACTH level is sufficient. This is a form of secondary adrenal insufficiency, not Addison’s disease. The treatment is the same as other forms of secondary adrenal insufficiency: usually hydrocortisone, but prednisone would also work. There is no need for fludrocortisone. Some important notes: OIAD is more likely with higher doses of opioids and longer duration of usage. It is potentially reversible if opioids can be discontinued. Finally, since the need for replacement glucocorticoids will increase in times of stress, if pain is not controlled with the opioid use, a higher dose of glucocorticoids may be needed.



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

QUESTION: Can I fast with Addison’s disease?

ANSWER: Yes, if the hydrocortisone and fludrocortisone doses are taken on time, a short fast of a few hours would be harmless. Prolonged fasts or greater than one day might cause hypoglycemia, which would be risky.



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

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

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



39) 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.



40) 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.



41) 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.



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

QUESTION: Do you know if it’s common for someone to get Addison’s Disease as a result of immunotherapy for treating cancer?

ANSWER: Yes, we do know that immunotherapy that is used for variety of cancers can cause adrenal insufficiency. It can actually cause primary or secondary adrenal insufficiency. When the medications activate the immune system, they can induce autoimmune adrenal insufficiency that injures the adrenal glands—Addison’s disease. Another pathway is to cause autoimmune hypophysitis. This is inflammation in the pituitary. That inflammation may reduce the production of ACTH, leading to secondary adrenal insufficiency, plus disruption of other pituitary hormones, including thyroid and gonadal function. The most common endocrine effect from these medications is thyroid changes—either hyperthyroidism or hypothyroidism. Sometimes these effects may resolve over time.





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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