Written by Paul Margulies, M.D, F.A.C.E., F.A.C.P. Medical Director, NADF.
Clinical Associate Professor of Medicine, New York University Medical School.
Q&A from March, 2007
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.
Question: I am an 18 year old college student with Addison’s disease. I was diagnosed approximately 4 years ago, and have yet to have an Addisonian crisis. I was looking to donate blood to one of the Penn State drives, and was simply wondering if it could compromise my health. The American Red Cross said they would take my blood, so that’s not an issue, but if the donation would be detrimental to my health, I might have to rethink the situation. Thank you for your time and patience.
Answer: I don’t recommend that Addisonians donate blood, because they tend to be more sensitive to changes in blood volume, and are therefor more likely to feel lightheaded and dizzy after losing a pint of blood.
Question: I have recently taken Augmentin antibiotic for an ear infection. After 7 days of taking the medication, I began to feel very weak, headachey, and nauseous. The 8th day I felt quite weak and nauseous as well but was able to take additional cortisone and keep that down. I finally ìremembered” that this was the same reaction I’d had to Augmentin many years before so stopped taking it. What happened years ago was that I’d been on Augmentin for about a week, I saw a fill-in doctor on the weekend for dehydration, and he said that he had another Addisonian patient who reacted the same way to Augmentin. Do you have any information on the link between Augmentin, Addison’s disease and Addisonian crisis? I’m sure there are other Addisonians who have reacted similarly to Augmentin.
Answer: Augmentin is a useful antibiotic, but the most common side effects of the drug are nausea and diarrhea. Anyone with Addison’s disease is more sensitive to the sudden onset of nausea and diarrhea, and therefor will feel quite sick or even tend toward an adrenal crisis in this circumstance. Augmentin does not cause Addison’s disease, but it can contribute to Addisonian symptoms because of the side effects. Addisonians should try to avoid medications that cause nausea, diarrhea or dehydration.
Question: Is Addison’s Disease getting in the way of me healing from a herniated disc? Is the medicine I am on going to interfere with any pain pills I might be on? I am on hydrocortisone 20mg am/10mg pm fludrocortisone acetate 0.1 am Synthroid 112mcg am. What pain pills would help if I have a choice to go on any? Sometimes the pain can be very intense.
Answer: I cannot advise you about which pain medication is appropriate for you. I can tell you that pain is a stress that often makes your body need more steroid hormone. If you notice more fatigue, loss of appetite, nausea or dizziness, these are signs indicating you need more hydrocortisone. Also, some narcotic pain medications increase the rate of metabolism of the hydrocortisone, which may also make you need a higher dose. The actual healing of the disc problem will not be affected by the Addison’s disease.
Question: At this time I am actually looking for more information about the safety of the new vaccine Gardisal (to prevent HPV infections) and its use in Addisonians. Any help you could provide would be great. Thank you for your time.
Answer: I think this vaccine is a good idea, and is safe for Addisonians.
Q&A from June, 2007
Question: I’m curious as to why you do not address PPNAD or Macro NAD on your website. These are both adrenal diseases that affect the population, they are just rarely diagnosed. I would like to see information, or at least their existence, acknowledged by your foundation.
Answer: Primary pigmented nodular adrenal disease is a rare cause of Cushing’s syndrome. Although not noted specifically, NADF’s pamphlet on Cushing’s does mention the rare occurrence of bilateral nodules as one of the causes of Cushing’s syndrome. Pigmented nodular Cushing’s is now acknowledged to be part of a genetic syndrome called Carney complex. This includes freckles on the face and lips, and Schwannomas (tumors made of nerve cells). It can also be associated with cardiac myxomas (tumors in the heart) and, rarely, excess growth hormone production. The usual treatment for the Cushing’s is bilateral adrenalectomy, leading to surgical Addison’s disease. The macro nodular adrenal disease as a cause of Cushing’s syndrome is not associated with other disorders.
Question: I have read calcium supplements are not needed by males, but with this condition is it a good idea to take them (and vitamin D)? If so, what is the recommended dosage, assuming a normal diet with one glass of milk/day?
Answer: For men I suggest a good multivitamin that contains some calcium (usually 200-300 mg) and vitamin D (usually 400 units). If he must be on higher than usual steroid doses, this should be increased to vitamin D 800 to 1200 units plus extra calcium such as Caltrate 600, one to two per day. These doses would also be needed by anyone found to have osteoporosis, where other medication to build bone (such as Fosamax, Actonel or Boniva) would be prescribed in addition to the calcium and vitamin D.
Question: II just read the email on decreasing your cortisone. I have been on 30mg for 27 years and I have tried to decrease it to 25mg. I only gave it about a week because I was tired. Do you think I should give it longer and see how I feel since the high dosage it not good for us? Please let me know what you think. Thanks.
Answer: Although I maintain that most Addisonians can and should get by with lower doses of hydrocortisone, it is not appropriate for everybody. Each Addisonian has his or her own personal medical situation that will affect their steroid needs. Other medical conditions, other medications, stresses, ability to exercise, mood, age, weight are just a few of the variables. Talk to your doctor about all of this before trying to taper the dose again.
Q&A from September, 2007
Question: Dear Dr. M, I was diagnosed with secondary pituitary adrenal insufficiency in 2000 after being treated with high doses of prednisone for sudden adult onset asthma. I went to Philadelphia this summer for a second opinion, as my endocrinologist is a very optimistic person and says he can get me off the steroids. He orders blood work every 6-8 weeks and gets a serum 8 a.m. cortisol level. Mine has been under 1 for most of the 9 years. The other endocrinologist ran the ACTH test. I take 7.5 mg of prednisone and he changed me to dexamethone for 5 days for the tests. The results came back as: Beginning cortisol level .4 – after an hour 3.9 – ACTH was < 2. He concluded…1. I had Addison’s. 2. I will be steroid dependent for the rest of my life. Do you agree? I want to stop weaning. I have been down to 6 mg of Prednisone a day and 0.2 of Florinef and felt half decent. The second opinion said my adrenals are shot and weaning now is not an option. Thank you for your time.
Answer: You do appear to have secondary adrenal insufficiency. The term Addison’s disease is reserved for primary adrenal insufficiency, so do not use that term. Since you are unable to taper off steroids over the past 7 years, and the ACTH stimulation test shows an inadequate reserve, I would agree that you should stop trying to taper. It is interesting that you are on Florinef. Most people with secondary adrenal insufficiency have adequate aldosterone production and need only prednisone. If your pattern included a high potassium level and/or low blood pressure, then you would need to stay on the Florinef.
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.
Question: How long does it take for Addison’s disease to develop? Years, months? Our son was generally a healthy person, but he does have a history of asthma when he was young. Also, he does have an unusual pigmentation on his skin that first showed up (very slightly) when he was barely two years old. When he was in his young teenage years, freckles showed up on his body, again in a very unusual pattern. A dermatologist said that it was unusual but did not see any medical problems and did not mention a possibility of hormone deficiency as a reason for the skin pigmentation.
Answer: Autoimmune Addison’s disease has a very variable onset, but probably takes several months to a few years for the injury to the adrenals to get to the point where signs and symptoms appear. It is unlikely that hyperpigmentation in a 2 year old would be a sign of Addison’s disease that developed years later. Hyperpigmentation reflect high levels of ACTH and would generally be seen in symptomatic individuals.
Question: I was diagnosed with Addison’s Disease 14 year ago. Presently taking 40 mg Cortisol, 30 in the morning and 10 at noon, 1.5 mg Florinef, 88 mcg thyroid. Three months ago I started having double vision. I consulted an ophthalmologist who prescribed a prism on the affected eye. It helped some, but without the prism, the double vision continued. He had no other suggestions for the cause or treatment of the double vision . He felt it might be due to the Addison’s Disease. I have looked on the Internet and found nothing to suggest this is the case. What is your take on this? Thanks you for your help.
Answer: Stable double vision that can be corrected with a prism is due to either swelling in an eye muscle or scarring in an eye muscle. Either could be related to autoimmune thyroid disease, not Addison’s disease. As part of the evaluation, the ophthalmologist should do a CT of the orbits which will help to confirm the eye muscle distortion. If thyroid function is stable on the replacement dose of thyroid hormone, there may be no specific medical treatment. However, if the double vision remains stable for many months, corrective surgery on the affected eye muscle may be useful.
Q&A from December, 2007
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 glucocorticoids, adequate replacement thyroid hormone and excercise before adding other drugs.
Question: I have had Addison’s disease since 1972. Within the past year, I have had experienced low blood pressure more frequently than before. I have tried water, Gatorade, increased prednisone and fludrocortisone acetate, and am concerned that I am not getting a long-term solution. Any ideas or confirmation?
Answer: Low blood pressure is a cardinal feature of Addison’s disease. Unless there is evidence of some other factor, my first response would be to increase the fludrocortisone acetate dose until the blood pressure is normal. I would expect your doctor to be able to document the need for an increased dose of fludrocortisone acetate by finding an elevated level of plasma renin and possibly as elevated serum potassium. I have many patients who need 0.3 mg of fludrocortisone acetate a day.
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.
Question: I have just visited my new dentist and again, as with my other dentists, I was given an article on the dangers of using bisphosphonates such as Actonel and Boniva which I have been taking. In June 2006 when I first received this warning, I stopped taking them for six months. My doctors said this warning was mainly for cancer patients and I should continue the drug to prevent bone loss. My bone density test in December 2006 was good for my age and arthritis I have. I do take 1500 mg of calicium with viatmind D daily. My question is ó should I continue with Actonel or Boniva? If so, whch do you reocemmend. Also, I suffer from back problems which it seems Addisonians are prone to. The MRI’s do not reflect a cause for my type of terrible pain. My hips are fine. I am on 7 mgs. of prednisone; 0.1 mg am + 0.05 mgs fludrocortisone acetate (Impax – Global); 125 mcg Synthroid; 2-3 – 50 mgs of tramadol; 200 mg’s Celebrex at night and sometimes 5mg Ambien to help sleep with pain. A multivitamin; the Calcium with D and Omega 1000. My question is: Do you think when I gave up my Premarin three or four years ago, did this cause my pain? Addisonian’s don’t make hormones that I know of. Could it be possible I need them? Could the lack of hormone be causing my pain? My doctor says, ìwe just don’t know”. So I would like your opinion. Thank you.
Answer: The back pain and risk of osteoporosis are totally separate. Osteoporosis does not cause symptoms unless there is a fracture. Arthritis, which is not part of the osteoporosis, causes pain. If you do have osteoporosis, you should take the calcium and vitamin D as well as a bisphosphonate. It can be Fosamax, Actonel or Boniva. They all work well to reduce the risk of fracture. They will not help with your back pain. The fear that the dentist has caused is totally inappropriate. The risk of osteonecrosis of the jaw is extremely unlikely with oral bisphosphonates. The only reason the dentist should be involved is if you actually have osteonecrosis, in which case you should stop the medication.