CSRF Questions & Answers

By Dr. David E. Schteingart M.D., Winter 2005

Question: The surgical incision to remove my pituitary tumor was done along the upper gum line. How long will it take to regain my sense of smell and taste and how long will it take for the swelling to go down?

Question: Does age have anything to do with the time required to recover from Cushing's?

Question: I have Cushing's and have this incredible desire to eat all the time. Is there a medical explanation as to why we want to eat so much? Will this resolve once my Cushing's is cured?

Question: Does one require less hydrocortisone replacement after menopause?

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Question: I am completely hypopituitary and had a bilateral adrenalectomy to control my Cushing’s. I now have Nelson’s Syndrome and am on 30mg/day of hydrocortisone replacement. I still have uncontrollable diabetes, muscle weakness and look and feel like I still have Cushing’s. Is this normal for Nelsons or could my replacement dose be too high?

Question: Is it possible for someone with Cyclic Cushing’s to have too little cortisol at times?

Question: Does strenuous exercise effect cortisol levels? If so, should I avoid exercise during a 24 hr urine test and/or for how long before starting the test?

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Question: I have been under constant, extreme stress for the past year and am now being tested for Cushing's. Can chronic stress cause elevated cortisol levels in the 24 hr urine test, the low dose dexamethazone test and the night-time salivary cortisol test? Also, can extreme stress cause Cushing's symptoms?

Question: I am in the middle of testing for Cushing's and just realized that I am 8 weeks pregnant! Are there risks associated with a high cortisol and the baby? Can Cushing's be diagnosed during a pregnancy? Is it safe to take the dexamethasone suppresion tests during pregnancy? Will the baby need any special attention after delivery?

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By Dr. Beverly K. Biller, MD 1995

Question: My doctor talks about the hypothalamic-pituitary-adrenal-system. What is this and what does it have to do with Cushing's?

Question: What is the difference between Cushing's Syndrome and Cushing's disease?

Question: I have Cushing's Disease and my doctor insists that I travel to a major medical center to have surgery. Why is it so important to have an expert pituitary neurosurgeon?

Question: Why does a patient who has been overproducing steroids due to Cushing's need to take steroids following curative surgery?

Question: Why do so many patients have pain, fatigue and mood swings months after successful surgery for Cushing's?

Question: Since I had successful surgery for Cushing's, I cannot lose weight and the weight is on my face and abdomen, just like when I was ill. Is the steroid replacement therapy responsible for this weight?

Question: I have symptoms of Cushing's but my 24-hour urinary cortisol measurement is normal. Is it possible to have a normal test and still have Cushing's?

Question: What is an ACTH Stimulation Test and what is it used for?

Question: What is Nelson's syndrome?

Question: What percentage of patients with Cushing's syndrome resulting from an adrenal tumor recover full use of their atrophied adrenal after a unilateral adrenalectomy? How long does this process take?

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Question: I have osteoporosis due to Cushing's. Will this improve over time?

Question: How often do additional pituitary tumors develop in Cushing's patients who have had a pituitary tumor successfully removed? Is there a time frame during which this occurs?

Question: Like others, it took me a long time to obtain a correct diagnosis of Cushing's. Why does it take so long before a doctor thinks of Cushing's and is there anything that we can do so we are taken more seriously?

Question: I know a woman whose husband died of Cushing's Syndrome and her daughter subsequently developed it. Is Cushing's Syndrome hereditary?

Question: What are the differences between hydrocortisone, cortisone acetate, prednisone, and dexamethasone? Are there any guidelines as to when one is used versus another?

Question: What medication is given following surgery for Cushing's syndrome and is there a proper procedure for weaning a patient from replacement medication?

Question: Do the symptoms of fatigue and weakness improve even more after replacement medication is discontinued?

Question: Does Cushing's syndrome have an effect on the thyroid gland? Are Cushing's patients more prone to thyroid problems?

Question: Is it possible to become pregnant and have a normal pregnancy after having had Cushing's syndrome?

Question: Are Cushing's patients prone to developing blood clots, particularly in the lungs? If so, what, if any, precautions should be taken?

Question: Can women on female hormone replacement therapy or birth control pills obtain meaningful results from an overnight dexamethasone suppression test?

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Question: How is the proper dosage of maintenance medication determined?

Question: What changes should be made to replacement medications during illness.

Question: Three years ago, I had an adrenal gland removed due to an adrenal adenoma that was causing Cushing's. Now, I am told that I have another tumor on my right adrenal gland. Is this possible, and what is the best way to tell if it is secreting cortisol?

Question: Following surgery for Cushing's, I have had a lot of swelling in my hands, feet and face. Is there anything that can be done to help this problem and is it anything to be concerned about?

Question: I had two unsuccessful transsphenoidal surgeries followed by radiation. Since my ACTH levels were still extremely elevated, I had a bilateral adrenalectomy. My physical appearance (weight and fat distribution) has not changed as much as my doctor expected. Would growth hormone therapy be useful in my case?

Question: I have had two transsphenoidal surgeries, followed by removal of my adrenal glands, and now have Nelson's. What would be the treatment of choice, complete removal of my pituitary gland, radiation, or both?

Question: What is a petrosal sinus sampling test, how is it done, and when is it used?

Question: What effects does Cushing's have on the eyes?

Question: Can Cushing's cause arthritis?

Question: What effects does Cushing's have on the immune system and does the immune system recover after treatment of Cushing's?

Question: What medications are available to lower steroid production, what are the side effects, and when are these drugs used?

Question: What are the typical medications for a person who has had their entire pituitary gland removed?

Question: Following radiation for a pituitary tumor, is there a risk that the entire pituitary will be unable to function normally?

Question: My Cushing's has been cured for about 3 years, but my muscle strength is still not like it used to be. I work out at a gym regularly, but is there anything else that I can do to try and recover my strength?

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Question: What is a dexamethasone suppression test and why is it used?

Question: What is pseudo-Cushing's?

Question: What is cyclic Cushing's?

Question: I've heard that some types of adrenal Cushing's can be caused by food or other hormones. Is that true?

Question: I had a pituitary tumor removed and am no longer on replacement medication. It seems that even something minor, like a cold, causes havoc with my system, including aches and pains. Is this normal after having had Cushing's?

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Question: From past issues of this newsletter, it appears that Cushing's doesn't cause arthritis. If it's not arthritis, why in the world do I have all these aches and pains?

Question: I have been cured from Cushing's for quite some time and my memory and quick recall for facts is back as good as ever, but I am still slower in doing things, make more mistakes than I used to, and have trouble "multi-tasking". Does anyone know what causes this and will it ever return to normal?

Question: I am recovered from Cushing's but have developed asthma. Is this related to Cushing's?

Question: Since my adrenal glands were removed, my testosterone and DHEA levels are low. Is there value in taking replacement doses of either one of these?

Question: I am recovering from Cushing's and I feel like I have a cold, but don't seem to be running a fever. Does Cushing's have something to do with this?

Question: What kind of patients does the National Institute of Health (NIH) accept for diagnosis and treatment of Cushing's and how does one go about getting into NIH?

Question: When I had Cushing's I lost a number of my teeth due to what I was told was bone loss. Is that the same as osteoporosis and would any of the osteoporosis drugs help me from loosing more teeth as some are still loose?

Question: From reading this newsletter, it seems that a number of us develop Cushing's following a pregnancy. Are Cushing's symptoms more likely to appear after a pregnancy and if so, why?

Question: I have been told that I either have Pseudo-Cushing's or a form of Cushing's that has not been detected by standard tests. It has been suggested that I take antidepressants for a while, specifically one of the serotonin reuptake inhibitors. Why should I do this?

Question: Is there a way to tell shortly after pituitary surgery if the surgery was successful? Also, how often should a patient be tested and with what tests after pituitary surgery?

Question: I am cured from Cushing's but now have extremely dry, itchy skin and a rash. Is this common after recovery from Cushing's?

Question: How does one tell the difference between withdrawal symptoms, that go with recovery from Cushing's, versus the more dangerous situation of not having enough cortisol?

Question: Are cured Cushing's patients at higher risk for heart problems?

Question: My doctors are having trouble finding the location of my tumor. Is it common for a pituitary tumor not to show on an MRI and what techniques are used to find ectopic tumors?

Question: What is the incidence rate for Cushing's, what does this mean, and is each case reported?

Question: I have been cured of adrenal Cushing's and am now having muscle "burning". Is this normal for post-Cushing's and are Cushing's patients prone to any connective tissue disorders?

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Question: I have been trying to taper my replacement dose of Cortisone following adrenal surgery, and have ended up in the Emergency Room several times due to adrenal insufficiency. I have been told that for my adrenal gland to start working again, I need to be this low. Is that true? What tapering protocol would you recommend and what tests should be performed during the tapering phase?

Question: How can a person survive with out the adrenalin from the adrenal gland and what othe critical hormones are made by the adrenal?

Question: Will my weight automatically return to normal after my Cortisol levels are normal? How quickly will this happen and will I need to diet? Also, I have heard that when most of the pituitary is removed, growth hormone replacement may be required before I can lose weight.

Question: I have heard that Cortisol suppresses presses the immune system. Why is it that I need to increase my Cortisol when I am sick? This seems like the time that one would not want to suppress the immune system.

Question: Is it possible for an atrophied adrenal gland not to recover following removal of an adrenal tumor?

Question: I am taking replacement Cortisone following bilateral adrenalectomy. For years now I have had elevated white blood cell count, which my doctors say are steroid?related. Why is this and does this mean that I am immunosuppressed?

Question: I am scheduled to have a bilateral adrenalectomy and have been warned that sometimes there is adrenal tissue in the body other than just in the adrenal glands. Is this true?

Question: I am on permanent steroid replacement following a bilateral adrenalectomy and was recently changed from Hydrocortisone 10 mg two per day to Prednisone 5 mg at bedtime because of a low morning blood sugar and elevated ACTH. I am now having trouble sleeping. Is this a common problem?

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Question: How does radiation therapy work? I thought it immediately killed the tumor, but I have heard that isn't always true.

Question: Can Cushing's syndrome or Cushing's disease cause severe headaches?

Question: How does Cushing's effect one's sleep and will my sleep improve after corrective surgery?

Question: Is there a set progression of symptoms for Cushing's? Are there some that usually appear first and then others follow?

Question: How should I expect to feel after surgery and during the recovery period?

Question: Since having Cushing's, my sex drive is next to nothing. Is this common, will this problem remain forever or get better? Is there anything that can help?

Question: While my cortisol levels are still high, is there anything I can do with my diet or exercise to keep my weight from increasing and loosing more strength? Is protein intake important?

Question: During diagnosis, I was asked if I was an alcoholic and was told that alcoholics can show Cushing's symptoms. Does this mean that I should not drink alcohol while my cortisol levels are high and during the recovery period?

Question: Are there any theories on what causes Cushing's tumors? Is it hereditary?

Question: Are the different surgical procedures for bilateral adrenalectomies equivalent and is it known immediately after surgery if any tissue capable of making cortisol is left?

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Question: Will the non-steroidal anti-inflammatory drugs help with the aches and pains due to the withdrawal symptoms that follow successful surgery?

Question: I have had a lot of memory loss following successful transsphenoidal surgery. Is this normal and will my memory return to normal after I'm off of replacement medication?

Question: Are there any drugs that interfere with cortisone metabolism or measurement that I shouldn't take while I am tapering off of replacement medication?

Question: Since successful surgery, I have a lot of leg cramps at night. Is this common and what will help?

Question: I have a lot of heart palpitations. My endocrinologist says they are not dangerous, but they really bother me. What causes these and should I see a cardiologist just to make sure?

Question: I am on permanent cortisone and florinef replacement. I have heard that some people take their cortisone 3 times per day rather than twice. Is this beneficial and how would I divide my current dose of 25 mg into three doses?

Question: Should every patient who has had pituitary surgery be tested for growth hormone deficiency and how soon following surgery?

Question: During my Cushing's, I lost some bone density, but since recovery, it is now close to normal. Does the fact that I had Cushing's make me more susceptible to osteoporosis in my later years?

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Question: How often do patients who have Cushing's become diabetic, what type of diabetes is this and does it usually resolve after treatment of Cushing's?

Question: I have been on replacement cortisone following surgery for over 20 years. Are there health problems related to long term replacement that my doctor and I should watch for?

Question: I had my entire pituitary gland removed and both adrenals, but still have a lot of Cushing's symptoms. Is it possible that I still have Cushing's, but the tests don't show it?

Question: What is the difference between Nelson's syndrome and a recurrence of a pituitary tumor?

Question: Will radiation of the pituitary gland cause problems for females wanting to have children? If so, how long will it take for the problem to become apparent?

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Question: Is it all right for someone who has had Cushing's or is recovering from Cushing's to use topical steroid cremes, Medrol™ dose packs, steroid inhalers for asthma, or prescription nasal sprays?

Question: Why does cortisol have such profound effects on one's emotions and memory?

Question: I have permanent pituitary insufficiency and find that I don't deal with stress well at all. Is this common for someone like me and will it get better?

Question: Will the glucosamine/chondroitin that supposedly helps arthritis help with the pain and stiffness of steroid withdrawal? Is there any harm in trying it?

Question: Is a Cushing's patient at higher risk for cancer during Cushing's and also after cure?

Question: I am on replacement cortisone following surgery and recently had an experience where I was really sick with an infection. I tripled my dose (to 60 mg) according to the instructions from my endocrinologist. I only ran a fever of 99, but felt much sicker. Will the higher doses of cortisone required during illness suppress a fever and symptoms?

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Question: Is it harder for someone who has Type II diabetes to lose the weight they gained during Cushing's?

Question: Can a person get Cushing's from using steroid nasal sprays and inhalers? Do any of these interfere with cortisol testing for Cushing's?

Question: What are the normal values for a serum cortisol, a 24-hour urine, and ACTH? Also, what is the generally accepted cortisol cut off point for an overnight low dose dexamethasone suppression test? Does the absolute number for these tests vary between labs?

Question: Is testing for Cushing's more difficult and can some tests come back normal when you haven't had Cushing's very long?

Question: Is it common for people to develop allergies following Cushing's?

Question: Does a 24-hour urinary cortisol measurement give any information on whether a patient without any adrenal glands is taking the correct amount of replacement hydrocortisone? Are there other tests that can be used to determine the correct replacement dose?

Question: Does stress make it more difficult to discontinue replacement medication and does stress increase the likelihood of pituitary recurrences?

Question: Does blood pressure always return to normal after Cushing's is resolved? If not, why would it still stay high if my Cushing's is gone?

Submit a Question to the CSRF email committee.

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