FREQUENTLY ASKED QUESTIONS

FOR ADDISON PATIENTS

 

TABLE OF CONTENT

 

(Place your cursor over the subject line, hold down the Control Button and Click your mouse.  To get back to the Table of Content, hold down the Control Button and press the Home key)

 

ADDISON CRISIS.. 4

ALDOSTERONE.. 10

ADRENAL INSUFFICIENCY.. 10

BIRTH CONTROL PILL. 13

BLOOD PRESSURE.. 14

BODY–EYE TREMORS/TWITCHING.. 16

CANCER.. 16

COMMON COLD.. 17

CORTISOL DAY CURVE.. 17

CORTISOL LEVELS.. 18

CORTISONE MEDICATION.. 20

CHILDREN.. 24

TEETH.. 24

DEXAMETHASONE.. 24

EATING DISORDER.. 25

EMERGENCY.. 26

FLU VACCINATION.. 27

HERBAL MEDICATIONS.. 27

HYSTERECTOMY.. 28

MEDICAL / DENTAL PROCEDURES-MEDICATION.. 28

DENTAL.. 28

STOMACH.. 28

SURGERY.. 29

MISCELLANEOUS.. 29

BLOOD AND ORGAN DONATIONS.. 29

CHANGE OF DOCTOR.. 29

IMMUNIZATION-HEPATITS.. 29

INFERTILITY.. 30

THIRST.. 30

NON CORTISONE MEDICATION.. 30

PROZAC VS ZOLOFT.. 32

SALIVARY STEROIDS.. 32

VITAMINS.. 33

OTHER MEDICAL CONDITIONS.. 33

ABDOMINAL PAIN.. 33

ANEMIA.. 33

CELIAC DISEASE.. 34

CHOLESTOROL.. 35

CORNEAL TRANSPLANT.. 35

DIABETES.. 35

FUNGAL INFECTIONS.. 37

HASHIMOTOS THYROIDITUS.. 37

HORMONES.. 38

GLAUCOMA.. 38

ILEOSTOMY.. 38

OSTEOPOROSIS.. 39

OSTOPENIA.. 39

PALPITATIONS.. 40

PANCREATITIS.. 40

TUBERCULOSIS.. 40

PREGNANCY.. 41

PROSTATE.. 42

SALT / SODIUM.. 42

SECONDARY ADDISON’S.. 43

SECONDARY ADRENAL INSUFFICIENCY.. 44

SLEEP.. 45

SPORTS.. 46

THYROID.. 46

TRAVEL. 46

ABROAD.. 46

ECUADOR.. 47

JET LAG.. 48

MEXICO.. 48

YELLOW FEVER VACCINATION.. 48

WEIGHT GAIN.. 49

FOR NON ADDISON PATIENTS.. 51


 

ADDISON CRISIS

We just survived our first Addisonian crisis at home. Is it common for an emergency injection (we used solu-cortef, my wife normally takes about 5mg prednisone) to disrupt the menstrual cycle?

 

Any significant stress can interfere with the regularity of the menstrual cycle. Since there are possibly many factors involved, including why the crisis took place, you should review this with your family doctor or endocrinologist who would know your wife's complete history and would be in a position to access the circumstances.

 

 

I was diagnosed with Addison’s when I was 12 years old; I am now 46.  I have been taking Cortef 10mg TID and Florinef 0.1mg "OD" since I was 20.  Two years ago, I started to show signs of perimenopause.  I recently found a book stating a "normal" person would produce extra hormones from the adrenal glands since the ovaries decrease production while going through menopause.  My question is: how much extra Cortef should I be taking?  I have also been having problems with increased BP.  Is this related to the menopause?

 

The comment that you heard stating that the adrenal increases its hormone output after the menopause is not correct.  At the menopause, the ovary stops producing estrogen but continues to produce androgens for 1 to 2 years.  The adrenal continues with its usual hormone output of cortisol, aldosterone and some weak androgens (DHEA and androstenedione).  These weak androgens can be converted to estrogens in fat tissue.  The conversion is small - about 1% -, and this contributes to the estrogen production after the menopause.  No change in your cortisol dosage is required.  The dose of cortisol that you are on is already at the high end of the usual cortisol replacement.

 

Do other members still have slightly tanned skin?  I feel fine but I still look like I've been on holidays somewhere warm.  Not as dark as I once was but I am still tanned.

 

It is not uncommon for individuals with Addison's disease to maintain an increased pigmentation after they have been treated.  It depends on the degree of suppression of ACTH and on the tendency for pigmentation genetically.  Someone who has tended to tan easily is more likely to maintain some degree of pigmentation with slightly elevated levels of ACTH.  If you are feeling well, I don't think it is a problem from a health standpoint.  It may however be a cosmetic problem.

 

If you want to look into it further, you can get your endocrinologist to measure your ACTH level first thing in the morning before taking your cortisol (it will be high) and then measure it again about two hours after taking your cortisol (it should be quite a bit lower).  This will show that your ACTH is responding appropriately to cortisol feedback.

 

My daughter, 19, was diagnosed with Addison’s 3 years ago.  She is still quite sick and is on several drugs but still suffers with extreme stress.  She also has problems with various infections and has trouble recovering from simple cuts and bruises and even from colds and flues.  It's as if her whole system is compromised.

 

My question is whether she should chance surgery for reconstructing her jaw.  She has some severe dental problems and the surgeons have suggested 2 operations to break her upper jaw in 3 places and try to bring her impacted teeth into alignment.  She is in constant pain with her teeth because of the misalignment.

 

Has anyone else had surgery such as this and recovered well?  The other option would be to try to pull some teeth and try to align the remaining teeth with braces, though it will be harder to fix the problem with braces alone.

 

Has anyone else noticed extended recovery times after surgery, or being more prone to infections?

 

Any suggestions would be helpful.

 

The problem with your daughter is a difficult one. First of all, the fact that she has not had a good response to the usual replacement steroids raises concern that there may be other factors going on. I am assuming that she has seen an endocrinologist and her hydrocortisone and florinef replacement are appropriate.

 

Individuals with Addison's disease generally go through surgery satisfactorily as long as their hydrocortisone coverage is looked after properly, but from what you have said, I am concerned that there may be other things that should be sorted out before considering surgery. Once again, you should discuss this directly with your endocrinologist. The decision about the best procedure in this situation should be reviewed with the oral surgeon. He/she should be aware of your daughter's medical history and the decision can then be designed to fit the situation.

 

I am 62 and I was told I have Addison's last April.  I get a lot of severe headaches and when I bend over or push to go to the bathroom it feels like my head is going to burst.  Is this from Addison's because I didn't have this before, and is there any thing I can do?

 

The symptoms you describe would not normally be seen in individuals with Addison's disease.  They seem to occur when you are doing things that increase the pressure in your head.  Since I don't know any of the factors leading to your diagnosis, it is hard to speculate on what may be contributing to your symptoms.  Individuals who have adrenal insufficiency on the basis of a pituitary problem could theoretically have similar symptoms to those that you describe.  Be sure to review your symptoms with your family doctor or endocrinologist. 

 

Is it possible to have Addison's without hyper pigmentation?  I have been sick for over a year and it has been getting increasingly worse.  The doctors are stumped as to what is wrong with me.  When I searched online for the symptoms I have, Addison's keeps popping up.  I have all the symptoms with the exception of hyper pigmentation.  Is it possible I have Addison's or does everyone who gets Addison's have hyper pigmentation?

 

It is possible to have Addison's disease without the pigmentation particularly in the early stages.  The pigmentation does occur in over 90% of cases prior to diagnosis.  It is also possible to have adrenal insufficiency on the basis of a pituitary problem.  These individuals do not get pigmentation.  If you talk to your doctor about this, a blood test for cortisol and ACTH on a morning sample would help to determine whether additional tests would be helpful.

 

My endocrinologist suggested contacting you with the following details: UFC is 1313 (reference range is 153-790).  How do we determine the best way to reduce and dose my hydrocortisone (currently taking 20 mg a.m. / 10 mg p.m).?  I have a cataract and osteopenia and constantly feel cold / have chills.  I have had Addison's since 1991.  I am 43 years old.  I have not been working for 6 years.  What are the benefits of a day curve at this stage?  Is it better to reduce by 5 or 10 mg given that the results are quite high?  Should I take three doses instead of two?  What minimum number of hours should lapse between doses?  My DHEA (Health Canada has twice refused the official request by the endocrinologist to obtain DHEA) levels are three times above normal limits but my endocrinologist has not suggested reducing from 50 mg / day because my hemoglobin and other blood results have normalized, except the occasionally high prolactin.  The bioavailable testosterone is normal even though the free testosterone is low. How do we determine what the best replacement amount and the best dosing schedule?  Thank you.  I know that I have probably provided more information than necessary.

 

Since I don't know all the details of your case, I don't want to be too specific.  It would appear that your current dose of cortisol (hydrocortisone) is a little high and it would be a good idea to lower it.  Since you have osteoporosis this is even more of a reason to lower the dose.  Your idea of 3 times a day dosing is a good one and I would suggest you lower the dose gradually.  For example take 15mg in the morning, 5mg at noon and 5mg at supper.  After 3 or 4 weeks, if you have no problems, you can try 10mg in the morning and 5mg at noon and supper.  You can stay on this dose for a few months and see how you feel.  There may be room for further adjustments but you should discuss any changes with your endocrinologist.

 

At this stage, I don't think a "day curve" would be of any help.  The 24hr urine is interesting and it would be informative to repeat this after a few months. 

 

I was diagnosed in 1993 with Addison's disease, and for many years was well maintained on a dose of 5mg Prednisone and 0.1mg Florinef. One of my presenting symptoms was vitilago but once I was stabilized following diagnosis and treatment of Addison's disease there was no further progression of the hypopigmentation and a marked improvement in the hyperpigmentation.  After a few years, my endocrinologist felt that I could be quite reasonably managed by my family physician, with whom I have a very good relationship.  Approximately 6 years ago, under the care of my family physician, my prednisone was increased to 6mg od (taken in the morning) due to a re-emergence of increased fatigue, mild nausea, occasional dizziness, and vitilago.  Since that time I have been quite well.  At 50 years of age, I exercise regularly, eat well and have no difficulty maintaining a healthy low body weight or maintaining a low Bp; fortunately, I require no other medications apart from calcium replacement and ostoforte.  I have two questions:

 

1. Do you recommend periodic reassessment by an endocrinologist even in the apparent absence of complications?

2. I notice in the frequent Q & A that very few patients appear to be taking prednisone.  While recognizing that treatment is very individual specific, is there a general preference at this time re: use of prednisone?

 

First of all it is good to hear that you are doing so well.  When things are going well, it would be a bad idea to break up a winning team.  If you have a good family doctor, who understands the situation, there is no reason why she/he cannot look after you.  If you have a problem your family doctor is not comfortable in dealing with, you can be referred back to your endocrinologist.  You should have an endocrinologist who knows you, so if a problem comes up, she/he will not have to start from scratch in sorting it out.

 

There is no major problem in the use of prednisone for cortisol replacement.  It is longer acting and some people like it for that reason.  The reason that cortisol is preferred is that it is shorter acting and if taken two or preferably three times per day, it provides a better approximation of the normal cortisol production.  Cortisol is normally secreted in bursts at intervals throughout the day and night.  In the intervals between bursts, cortisol levels drop and it is felt that these low levels may be important in preventing an excessive effect from the cortisol.  Since prednisone is longer acting, it is more difficult to simulate these conditions.  In your case, you are taking the prednisone once daily and are getting along well, so I don't think you should change.

 

My 18 year old daughter was diagnosed with Addison's Disease two years ago.  Since that time her periods have become very painful.  Could this be a coincidence, or is it possible the lack of hormonal stability has contributed to the increased pain?  Any suggestions for pain control for her?

 

Regarding menstrual pain, the pain associated with menstrual periods is due to cramping involved in expelling uterine contents and usually varies from cycle to cycle.  This can occur in otherwise healthy individuals.

 

At the time of diagnosis of Addison's disease the adrenal gland is generally more than 90% destroyed, usually by antibodies directed at one of the proteins in the pathway for cortisol formation.  This means that there had been progressive destruction of the adrenal over months to years prior to diagnosis.  With treatment, there is a return to more normal cortisol levels.

 

It is uncertain why your daughter's menstrual periods are more painful now that she is on her medication.  It may be a reflection of slightly greater estrogen and progesterone production in a healthier individual resulting in a larger build-up of the uterine lining and heavier menstrual flow.  The usual treatment for menstrual cramping is an anti-inflammatory such as Advil, which you can get over the counter, or naproxen or Motrin which are slightly more potent and require prescriptions.  These medications are usually very helpful in relieving the cramping.

 

 

I was newly diagnosed with severe hypoadrenia/Addison's last month.  My main Addison's symptoms are still chronic fatigue and bodily weakness.  I've been on 20mgs/day of Cortef for about a month now. I received about a 40% improvement for my above symptoms, so far.  But, I am still very fatigued and unproductive as a result.  So I was wondering if I should increase my current 20mgs/day dosage of Cortef or try another drug and dosage instead?

 

So far my family doctor is the only one treating my Addison's.  There are no endocrinologists in the Kamloops, BC region.  I need your help as soon as possible, please.  Thanks for listening.

 

Chronic fatigue and body weakness are non-specific symptoms.  It would be helpful to know what investigation was done to make the diagnosis of adrenal insufficiency.  If the diagnosis is not correct then cortisol will not solve the problem.  If the diagnosis is correct, the treatment usually includes both cortisol and Florinef a hormone that helps with salt retention.  The tests to determine if you need Florinef are electrolytes (sodium, potassium and chloride), a test that is readily available, and plasma renin, a test that is available through most commercial laboratories.  Twenty mg of cortisol should be sufficient.  Remember that Addison's disease comes on over a period of months to years so it may take a while to reverse the changes that have taken place.  Before going any further, it is important that you discuss this with your family doctor to review the original diagnosis.  If there is no endocrinologist in your area, your family could get a phone consultation from one in Vancouver.

 

 

I have had Addison’s for 3 years now.  I take 37mg of cortisone acetate and 0.1mg of Florinef.  For quite awhile now, I have been getting these feelings of total drain.  They can hit any time of day, and in minutes, I feel like a total zombie.  There have been times that I have had to leave work to go home to bed.  I have had all kinds of tests - B12, thyroid, iron, even for MS.  I still have not gained back my muscle strength, although I do exercise every day.  I have tried to increase my dosage, add salt to my water, drink more.  I'm so frustrated; sometimes I just want to give up.  I'm always tired, my personal life is terrible because I just can't think and I have no energy.  I will not give up but keep hoping each day it will get better.  I have asked the doctor to check into DHEA which may help?  Do you have any suggestions?

 

I am sorry you are having so much trouble getting your treatment sorted out.  I am assuming that this has been going on right from the time of your diagnosis of Addison's disease and, if this is correct, I would want to go back to review the test results that led to the diagnosis.  You should review these with your endocrinologist to be sure that there are no other factors that could be causing your symptoms.  If the diagnosis is definite, the dose of cortisone of 37.5mg per day, along with the 0.1 mg of Florinef, should make you feel better.  These are average doses and adjustments of slightly more or slightly less of each of these medications is usually required.  Some individuals feel better if their cortisone is given in 3 doses, and some people find that taking their medication earlier in the day gives them more energy at work.  The requirements for cortisone are quite variable and if you are not doing well, measurements of ACTH and renin can be helpful in assessing this.  These tests would best be done by your endocrinologist because the interpretation is important.  It is also important to remember that a proper diet is important with adequate vegetables and protein and only moderate amounts of carbohydrate to avoid a tendency for reactive low blood sugars 2 to 4 hrs after eating.

 

I was diagnosed with Addison's and Hypothyroidism at age 27, and am 52 now.  I have a nephew who was diagnosed with the same thing at the same age, and all of the brunettes in our family have hypothyroidism.  I was given very little explanation of what to expect with this condition, except to take extra cortef if I was sick or stressed.  I didn't even know about having a solu-cortef kit until I had a crisis, about 10 years ago.  This led me to realize that if I want answers about Addison's, I will have to find them outside the doctor's office.  I hope you can put my mind at ease over this question.  Over the last few years, I have experienced a few odd "symptoms" and I was wondering if they could be related to Addison's, if they indicate that something needs to be checked, or if they are purely coincidental.  For the last 3 years, my left outer-ear has been very tender/sore, from time to time keeping me awake if I try to sleep on the left side of my head.  I also seem to have some tinitus.  My current doctor sent me to have my hearing checked, and I was told that my ears and hearing are normal for my age.  The doctor prescribed pentasone ear-drops, and they seem to be helping, which I don't understand.  How do drops for the inner ear relieve pain in the outer ear?

 

In May 2005, my skin erupted in huge, hot, itchy, red welts.  Twice I had to go to emergency because the pain was so bad I couldn't think straight.  The first time, I was put on IV cortisone, and some kind of pain medicine.  The second time, I was put on hydroxzine, and the welts went away and didn't come back.  I still have the rest of the bottle of hydoxzine, but haven't needed it since.  A couple of years ago, my blood pressure spiked so high that my doctor almost didn't let me drive home from the clinic.  He put me on blood pressure medicine, in ever increasing doses, until it finally seemed to be under control.  I asked him if it wouldn't be easier to just cut back on my florinef, but he was afraid to do that, so I cut my dose in half on my own.  My blood pressure went back to normal, I quit the blood pressure meds, and I feel better than I have for years.  I also cut back on my cortef and dropped about 20 pounds.

 

I was told years ago that I had irritable bowel syndrome, but it seemed to be under control.  In March, I started to experience terrible stomach pains, and had diarrhea for months.  I asked my doctor if I should be tested for food allergies, but he dismissed this as very unlikely.  An endoscope in August diagnosed a hiatus hernia, and I am now on Pantoloc.  Things are almost normal now, with just a little tenderness and the occasional loose bowel movement.

 

Over the last few years my feet, especially my toes, seem incapable of staying warm.  I have to have at least one hot bath a day to warm up, and it is interesting to watch my toes go from dead white to dark purple to healthy pink as they warm up in the hot water.  My fingers get cold too, but I can usually warm them up by running warm water over them, and it is not as dramatic.  One doctor said I have Reynaud's syndrome, but didn't suggest how I should deal with it.  Finally, after complaining all summer to my doctor about burning, hot eyes, he sent me to get my eyes checked.  Yup, they are dry, and now I use eye drops every few hours to deal with that.  I asked the optician if the dry eyes could be related to my occasional dry mouth, and she thought that was interesting, but didn't say anything else.  So, am I a nut that collects interesting but meaningless symptoms, or could there be some pattern here?

 

I am sorry that you have been going through so much stress the past 3 or 4 years.  It distresses me when someone says that they cannot get the information they need from their doctors.  First of all, you should have an endocrinologist who can discuss these concerns with you.  Not all questions have answers but at least you should be able to go over your concerns with your endocrinologist to see if there is a relationship with the family of autoimmune diseases that include hypothyroidism and Addison's disease.

 

Secondly, it would be unwise of me to try to specifically answer your questions because I am not aware of the context in which these symptoms are occurring.  I will try to make some general comments about some of the questions you have raised.

 

The pentasone ear drops contain a cortisone-like steroid so when you put them in your ear canal, there would be local absorption which would relieve inflammation and therefore decrease your pain in the outer ear.

 

The skin problem that occurred in May 2005 must have been an allergic reaction.  The fact that it has not recurred since Aug 2005 is good and you may not find out what the offending allergen was.  This is not likely related to your Addison's disease.

The blood pressure problem and the dose of medication for Addison's disease are ongoing considerations.  These must be discussed with your endocrinologist.  The general rule is that "the lowest dose of cortisol that makes you feel well is the correct dose". With respect to Florinef, blood pressure and plasma renin are helpful in making decisions.

A hiatus hernia is not part of the autoimmune complex.

Dry eyes and dry mouth could be due to a condition known as Sjogren's syndrome.  This problem and Raynaud's syndrome are generally treated by rheumatologists.  These conditions are not generally part of the family of autoimmune endocrine problems, but since they are probably autoimmune in origin, they may occur more frequently in individuals with autoimmune endocrine problems.  Be sure to review all of your concerns with your endocrinologist!

 

ALDOSTERONE

Can low aldosterone present with high blood pressure? A friend was started on 30mg in hospital and increased by the endocrinologist to 40mg. She is extremely thirsty and has gained 20lbs over several weeks. Her blood pressure is high and unstable. The doctor says Florinef is not indicated because her blood pressure is already high.

 

Low aldosterone will not cause high blood pressure. The decision not to start on Florinef was a reasonable one in someone who has high blood pressure. I suspect the reason your friend gained 20lbs is likely because he/she is on too much cortisol. A dose of 20mg a day of cortisol is usually enough if it is spread throughout the day. While some people feel better on 30mg, I think that 40mg is too much cortisol.

 

ADRENAL INSUFFICIENCY

For the past year, I have had increasing episodes of dizziness, two of which resulted in falls. My body has felt weak and I have had several infections, both respiratory and bladder. My family doctor (for one reason or another) did a cortisol test which came back as being very low. I was forwarded to an endocrinologist who repeated the morning cortisol level and agreed that the cortisol was low and suggested an insulin hypoglycaemic test. This was performed and she informed me that I have cortisol insufficiency. She now wants to do an MRI of my pituitary gland. She has also prescribed Cortef 10mg twice a day for at least one year. Initially she thought the problem was Addison's disease which I understood was an adrenal insufficiency. My questions are why is an MRI being performed? Is Cortef a safe drug to take for cortisol insufficiency? I am a bit concerned about taking a steroid for such a long period of time. I have heard that they can cause weight gain etc. I do have a call into the endocrinologist to get more answers as the message regarding my test results was left on my answering machine and thus I did not get to ask her any questions. Does this sound like Addison's disease or are there other causes for cortisol insufficiency?

 

The fact that your cortisol response to insulin induced hypoglycaemia was low, would be in keeping with adrenal insufficiency. This problem can be due to destruction of the adrenal glands or to a problem in the pituitary gland which controls the adrenal gland by its production of ACTH. Usually ACTH is measured along with cortisol during the insulin test and this helps to determine the cause of the problem. The MRI is done to visualize the pituitary if there is any concern that you could have a pituitary problem. I am glad that you are going to talk to your endocrinologist to find out exactly what was found during testing. If it was shown that you have adrenal insufficiency the treatment is usually lifelong. Your endocrinologist will follow you, be sure the dose is correct and you should not gain weight. If the problem is in the pituitary gland, you would require other investigation and treatment. It is important to discuss the tests and the treatment with your endocrinologist so you truly understand the cause and the management of the problem so you will be able to make the right decisions if you have any problems in the future.

 

How will I feel if I have had too much potassium in a day?

 

In general the body regulates potassium levels in the body and if you take in more than you need, this is excreted in the kidney.  Without adequate aldosterone or fludrocortisone, in an individual with Addison's disease potassium levels can go higher than normal and sodium levels go lower than normal. but there are usually no symptoms specific to the elevated potassium.  If you took in more potassium than you required in one day, I would not expect you to have any symptoms.

 

I was recently diagnosed with Addison's Disease and find no support.  What should I do if I get a cold or stomach flu?  When is it necessary to receive intravenous?  Any advice you could give me in general would be helpful.

 

It is difficult to be in a position where you feel you do not know where to turn for support.  The first thing you should do is talk to your family doctor about how you feel.  There must have been a doctor who made the diagnosis of Addison's disease and prescribed your medication.  It would be reasonable to make an appointment with her/him and go over the everyday management of individuals with adrenal insufficiency.  If there is an endocrinologist in your area, it would be important to meet with her/him so they will be familiar with your case and can respond more readily if you need help.

 

A second option, which should NOT replace the first, is to look at the Canadian Addison Society website (http://www.addisonsociety.ca/faq.html).  There are a lot of questions from other Addisonians and some of them may be similar to yours.  You can see if they are of any help.

 

Finally, if you are on a glucocorticoid (cortisol, cortisone or prednisone), the dose would be sufficient for everyday activities.  If you get a cold, the flu, or a significant stress, you should increase the dose by 1/2 or a full tablet of what you are taking or double your daily dose depending on the severity of the situation.  If you have gastrointestinal problems for 24 hrs and cannot keep your medication down, then you should go to the hospital emergency dept for intravenous solu-cortef and saline plus some investigation about the current problem.  If you do not live near a hospital, you should consider having a kit at home for an intramuscular injection for use in an emergency.  The details of this kit can be found on the website and you will have to get your family doctor or endocrinologist to write a prescription for you (http://www.addisonsociety.ca/emergencyproc.html, http://www.addisonsociety.ca/injection.html)

 

Whenever I try to explain to my friends and family that I have a disease in which my adrenal glands don’t work (i.e. I don’t produce adrenaline, among other things), I always get the reaction of "So you don't get scared or excited?".  I never know how to respond!  There must be a correlation between being scared and having little adrenaline.  What is it and what is a better way of explaining it?

 

This is an interesting question.  You are correct that the adrenal makes adrenalin in its inner portion (medulla) and cortisol is made in the outer portion (cortex). Adrenalin and a related hormone, noradrenalin involved in the "fright, flight" response to acute stress, are also produced at the ends of specific nerves.  In Addison's disease, the cortex is destroyed by antibodies directed at one of the proteins used in the formation of cortisol.  The medulla is left alone so can still produce adrenalin.  Even if the adrenals are removed surgically, the nerve endings produce enough adrenalin and noradrenalin to look after blood pressure needs and our fright response.

 

Is there a relationship in women between hormonal shifts and Addisonian crises?  I was first diagnosed at puberty.  Shortly after receiving treatment and stabilizing, I started my periods.  With my first 2 pregnancies, I had crises during the first trimesters.  For my 3rd, we doubled my cortef intake immediately and throughout the pregnancy, and kept out of the hospital.  I'm now 44 and often have a 'down' day with Addison-type fatigue just before my period starts.  Should I be concerned about how to approach menopause without major glitches?

 

 You have raised some good questions.  When you were first treated for Addison's disease at about the time of puberty, you were probably quite unwell.  With treatment, your condition would have improved and you then began normal menstruation.  Menstrual periods often stop during periods when you are unwell.  During pregnancy, the requirement for cortisol increases and the increased requirement is about 1˝ to 2 times the regular dose, so you did exactly the right thing.  The "down" days prior to menstrual periods are not necessarily related to your Addison's disease and may be due to the changing hormonal production as you approach the menopause.  It is not unusual to have some cycles in which you do not ovulate in this situation.  With the menopause, I would not anticipate any change in your requirement for cortisol, so your dose for both cortisol and florinef should be about the same.

 

I had a right adrenalectomy 4 years ago.  After surgery, my left adrenal and pituitary glands shut down.  I was placed on prednisone, and six months later, was off of it, as my glands "woke up" and were functioning fine.  Last year, I noticed some symptoms similar to Cushing’s syndrome but also had these with the tapering of prednisone: weak, aching muscles; a few times my legs felt like they would buckle; headaches; blurred vision; nausea; vomiting after a glass of wine and a meal.  There is one little difference - I have noticed a few scars have turned a brownish colour; not all my scars but one in particular that has been there for 5 years has turned this colour.  My blood pressure is normal, I have only lost a few pounds in the past week, but I have had diarrhea, similar to what I experienced when I tapered the steroids after surgery 4 years ago

 

 Does this sound like a return of Cushing’s or Addison’s?  I realize diagnosis is difficult without testing, but I am wondering is it possible that my other adrenal has shrunk, just tired of working, or something similar to that?

I have an appointment with my GP.  I spent a miserable weekend and decided that these gradual symptoms need some investigating.

 

I am not sure that I can answer your questions because I am not sure that I have all the information.  I am assuming that your adrenalectomy was for a cortisol secreting adrenal adenoma.  In this situation, the pituitary and the other adrenal are suppressed and depending on how long this had been going on, it can take months to years for the pituitary and adrenal to respond so that you do not need replacement with cortisol or prednisone.  This sequence seems to have proceeded in your case.

Your new symptoms are difficult to assess without some lab work.  If you are off the prednisone, you should ask your doctor to measure your serum cortisol and ACTH.  This will tell you if the other adrenal is working and whether the pituitary gland is functioning normally.  If you have this information, it will remove the guesswork so you will know whether you are having a return of your symptoms of Cushing's syndrome or whether there are other causes for your symptoms.

 

BIRTH CONTROL PILL

Can a young woman of 17 or 18 take birth control if she has Addison's disease?

 

Yes. There is no contraindication for individuals with Addison's disease to using the pill. There are however, contraindications to using the birth control pill in the general population that should be respected.

 

Is it possible to raise your cortisol levels in Addison's by using a certain birth control pill instead of hydrocortisone? I'm a 33 year old female and do not look forward to the side effect profiles presented by the medicines like prednisone, hydrocortisone, etc. Is there a birth control pill that would raise my cortisol levels adequately and present an alternative to hydrocortisone treatment?

 

You have asked if there is an alternative to taking hydrocortisone for the treatment of Addison's disease. Since the problem in Addison's disease is a deficiency of hydrocortisone, there is no alterative but to replace the hydrocortisone by using hydrocortisone itself or another glucocorticoid. I prefer hydrocortisone. The good news is that you do not have to have bad side effects from the hydrocortisone if the dose is correctly adjusted. By keeping the dose to the lowest dose that makes you feel well, you should be replacing what you need without an excessive dose. This dose would be a total of 15 to 30mg per day in divided doses, generally around 20mg. The birth control pill does not provide any glucocorticoid. In individuals on the birth control pill, the plasma cortisol levels rise to almost twice the normal levels, but this is because there is an increase in the levels of the protein that transports hydrocortisone in the blood. This increased hydrocortisone is not available to get into the tissues so the effective level of hydrocortisone is unchanged.

 

There is a new form of birth control pill - YASMIN - which is contra-indicated for people with adrenal problems. Why?

 

Yasmin is a birth control pill that contains an estrogen and a progestational agent as in other birth control pills. The difference is that the progestational component in Yasmin is different from other birth control pills since it also blocks the action of aldosterone, the adrenal hormone that stimulates the kidney to retain salt. This may be a desirable effect in some women because it decreases fluid retention, but in individuals with Addison's disease who are taking Florinef, it will block the salt-retaining effects of the Florinef and could cause a fall in blood pressure. It is therefore not a good choice for women with Addison's disease.

 

BLOOD PRESSURE

I am an 85 year old male, in excellent health, who has had Addison's disease for 38 years. I have been on the same dosage of Cortisone Acetate since 1968. I take 25mg in the am and 12.5mg in the pm. I started on Florinef in 1978, which I took for about 22 years until my blood pressure started to increase, and the Florinef was discontinued. My systolic reading is from 150 to 175, while my diastolic is 55 to 75. Both are tending to increase. I am now taking 2.5mg of Altace daily. My doctor keeps wanting to increase the Altace because of the high systolic reading. Should I be concerned that my systolic reading is higher than normal, while the diastolic reading is below normal?

 

The problem of treating high blood pressure in patients with Addison's disease poses some specific problems. Cutting back or stopping the Florinef is logically the first step as has been done in your case. It is important to follow serum potassium once the Florinef has been stopped. The addition of Altace as a next step is a reasonable one, but if this is not achieving the desired result, I tend to try a calcium channel blocker such as verapamil. I would avoid Norvasc because it causes ankle swelling. Your family doctor has obviously taken good care of you and it is reasonable to try to keep your blood pressure under control. At age 85, you may be sensitive to medication, so it is wise to start at a low dose and gradually increase it if necessary. It is also wise to stop medication that is not achieving the desired result when starting something new to avoid getting on a variety of preparations that cause some cross reactions.

 

A question was raised about the relationship of high blood pressure and small hemorrhages appearing over the white part of the eyes.

 

First of all, we try to regulate the amount of Florinef to avoid causing high blood pressure but patients with adrenal problems can have the usual types of high blood pressure seen in the general population. In general, high blood pressure is less common in patients with adrenal insufficiency than in the general population. The small hemorrhages are possibly related to increased fragility of the blood vessels and this can be seen in patients who are taking a little more cortisone or prednisone than they might need. This problem can also result in increased bruising, usually on the legs or areas that receive minor trauma.

 

I am 32 years old and was diagnosed with Addison’s 9 months ago.  I am now on 25mgs of hydrocortisol delivered 3 times a day.  My blood pressure began rising and I was taken off the florinef because of that.  My electrolytes have been monitored by blood tests and are thus far fine.  However, my blood pressure continues to be high 145-160 over 90-105 and I have been getting headaches.  What should our next steps be?  I gained a lot of weight originally probably due to too much prednisone and although now that my drugs are stabilized I am finding it very hard to lose the extra weight.  Does being on a synthetic cortical steroid make it harder to lose weight and could the extra weight (I'm about 30 lbs over) be contributing to my high blood pressure?

 

It is often difficult to get stabilized on your replacement medication.  I was uncertain about your cortisol dosage; you mentioned 25mg taken three times per day.  I presume the dose is 25mg spread over the three times rather than 25mg three times per day, i.e. 75mg per day.  The dose requirement for cortisol varies from individual to individual so even 25 mg may be more than you need.

 

The fact that you are having weight problems and blood pressure problems suggests that the dose could be too high.  You should discuss the problem with your endocrinologist and have her/him check your ACTH and renin on a morning sample before you take your medication to determine whether your dose is correct.  Your ACTH should be high before you take your cortisol, usually about 40 pmol/l.

 

My wife has been taking Florinef for 3 months and has suddenly begun to experience serious side effects (dizziness, intense trembling, breathlessness, high BP, confusion, nausea).  We know Florinef is the cause as all the symptoms disappeared when she discontinued it.  Other than reducing the dose, are there any ways to reduce serious side effects from Florinef?  What do Addisonians do who cannot tolerate or are allergic to Florinef?

 

I doubt if your wife is actually allergic to Florinef or even sensitive to it.  The symptoms you described suggest that she was getting too much Florinef, causing excessive salt retention which in turn caused the symptoms.  The dose of Florinef must be regulated and varies from individual to individual.  Occasionally, individuals can get along without Florinef because they have high blood pressure from other causes.  Others need higher doses to regulate their blood pressure.  The most sensitive tests to determine the requirement for Florinef are a plasma renin and electrolytes.  Your family doctor or endocrinologist will know.

 

BODY–EYE TREMORS/TWITCHING

Can Hydrocortisone cause body tremors (eye tremor, calf tremor and neck tremor)?

 

None of the biological effects of cortisol cause shaking, so I do not think that this would be a cause for this

 

I read, with interest, the letter to the Doctor in the June 2006 Newsletter. It included various questions, but the one of interest to me was not answered. This lady had problems with leg muscle twitching after she went to bed. I also experience this and would very much like to know if other Addisonians do as well, and I also would like to know what causes this, and/or what can be done about it?

 

Leg cramps and muscle twitching at night are relatively common complaints in the general population and I am not aware that individuals with Addison's disease are more likely to have these problems. You could discuss this with your family doctor to be sure your sodium, potassium and calcium are normal. Sometimes increased or unusual activity will cause these symptoms temporarily. If this is a problem which is interfering with your sleep, your family doctor may want to do some further studies or try you on some medication to relieve the symptoms.

 

A question was asked with respect to the relationship between rapid eye movements and Hypothyroidism or Addison's disease.

 

As far as I am aware there is no relationship between either Hypothyroidism or Addison's disease in eye movement problems. It's possible that patients with Hyperthyroidism or patients who are treated with too much thyroid hormone could have some suggestion of increased rapid eye movements but this would require a fairly significant excess of thyroxin and would be quite unlikely.

 

CANCER

I had both of my adrenal glands removed due to the spread of lung cancer.  My lung cancer has been under control for 3 years now.  No chemo or treatments.  I am now taking 75 mg. of cortisone a day and .01 mg of florinef.  My family doctor says one thing and the endocrinologist says another, while I suffer with this problem. I feel tired most of the time.  Any small jobs I try to do really tire me out.  Are there any special tests I could have done to correct my problem?

 

Your situation is more complicated than a loss of adrenal tissue.  If you are being treated for the lung cancer, both the treatment and the underlying problem could cause fatigue.  From the standpoint of your adrenal status, you should be on cortisol and florinef.  The dose of cortisol should normally be between 15 and 30 mg/day and the dose of florinef between 0.1 and 0.2 mg/day.  The tests that will guide your doses of medication (but will not give you absolute criteria) are - blood pressure, electrolytes (sodium, potassium and chloride) and renin for the florinef and a morning ACTH which should be slightly high for the cortisol.  Your endocrinologist will probably have already done these tests so you can review them with him/her to be sure everything is in order.  Unless there is something you haven't mentioned, a dose of cortisone of 75 mg/day is too much for adrenal replacement.  Cortisone at those doses has a tendency to decrease muscle build-up and cause protein loss - causing things like thinning of the skin and bruising.  I don't know what you are hearing from your physicians, but they should be talking to each other and to you to explain their views.  You should not be caught in the middle.

 

COMMON COLD

I am wondering if it is possible to take a herbal product called COLD-FX that is available to help with the common cold.  It’s designed to help stimulate the immune system.  I have Addison's and take 15mg of Cortef a day.

 

COLD-FX is a special extract of North American ginseng that is marketed to decrease the frequency and severity of symptoms of the common cold.  The available studies have been carried out on healthy volunteers and individuals taking corticosteroids were excluded from the study.  This exclusion was most likely designed to exclude individuals taking large doses of steroids as treatment for an underlying disorder and not at individuals taking physiological doses as is used in Addison's disease.  There is however, no information about its use in individuals with Addison's disease.  This is a patented over-the-counter medication and the active material and mechanism of action are unknown.  The clinical studies of its beneficial effects are limited.  Since the common cold is a self limiting problem, it is best to avoid potential complications of taking a compound which is not well defined. Remember, you should increase your hydrocortisone (cortisol) by 1/2 to 1 tablet per day, when you have a cold.

 

I've got quite a bad cold which is not clearing up easily and I feel very unwell. What should I do?

 

Take an extra cortisol each day for 2 or 3 days until the symptoms improve. Do not carry on longer than necessary.

 

CORTISOL DAY CURVE

Can you please tell me where in Canada I can go to get a cortisol day curve done on my wife who has Addison's?

 

A day curve follows cortisol levels throughout the day. For individuals who are not in hospital, this would mean going to the lab every 2 or 4hrs starting at 8am until the lab closes, usually at 6pm. This is most useful in someone who is not on cortisol replacement, since it would provide information about the output of cortisol by the adrenal gland. In someone who is on cortisol it would reflect the levels of cortisol produced by the medication and would depend on when the cortisol tablets were taken. In general, this would not provide much useful information unless there is some reason to be concerned that the metabolism of cortisol is altered. This can occur in individuals on some types of medication such as anticonvulsants. Another way to get this type of information, is to do a 24hr urine collection for free cortisol. It would be lower than expected if metabolism is increased. These tests can be arranged at any of the commercial labs.

 

I was diagnosed 12 years ago with Addison's disease. It appears that my hydrocortisone dose is too high (determined through 24hr urine Cortisol test) and my Florinef is too low. After 4 months I'm still having a terrible time getting the correct dose. I've asked my doctors where I can have a day curve done; they don't seem to know, would you?

 

You've raised two interesting questions. The first is the value of a day curve in determining your hydrocortisone dose and the second is the role of a 24hr urine in determining your dose of hydrocortisone. When you take hydrocortisone by mouth, it is absorbed rapidly and is metabolized fairly quickly. The blood level of hydrocortisone will fall by 50% over 90 minutes. If you take blood levels of hydrocortisone at two to four hour intervals throughout the day and night, the blood level that you measure will depend on when you took your last tablet. The blood level when you wake up will be low and after you take your morning tablet, the blood level will rise into or above the normal range, then fall as the hydrocortisone is metabolized. Normally, hydrocortisone is secreted at intervals during the day and less frequently during the night, then at increasing frequency starting about 4am anticipating our rising in the morning. This provides variation in blood levels during the day with highest in the morning. A day curve will tell you what your blood level is at a specific time and it depends on when you took your last tablet. It does not help much in determining how much you need. A 24hr urine for free cortisol tells us how much hydrocortisone is excreted in the urine unchanged and in general is a good measurement of how much hydrocortisone is produced during the 24hr period. When we take hydrocortisone tablets, our blood levels may at times be higher than normal and at other times low. This may influence how much hydrocortisone is excreted, so once again, may not help to determine how much you need. The most important thing is how you feel. Dose requirements vary and are influenced by your size, what you do and what other medication you are taking. The right dose for you is the smallest dose that makes you feel well. The dose of Florinef (fludrocortisone) is best determined by checking plasma renin and your blood pressure. A dose of 0.1mg daily is the commonest, but it can vary significantly from person to person. You should review these questions with your family doctor or endocrinologist to be sure there are no specific circumstances in your case that requires different treatment.

 

CORTISOL LEVELS

For the past year, I have had increasing episodes of dizziness, two of which resulted in falls.  My body has felt weak and I have had several infections, both respiratory and bladder.  My family doctor did a cortisol test, which came back as very low.  An endocrinologist repeated the morning cortisol level, agreed that the cortisol was low and suggested an insulin hypoglycemic test.  This indicated that I have cortisol insufficiency.  She now wants to do an MRI of my pituitary gland.

 

She thought the problem was Addison's disease (adrenal insufficiency), and has prescribed Cortef 10 mg twice a day.  My questions are: why is an MRI being performed? Is Cortef a safe drug to take for cortisol insufficiency?  She has prescribed it for at least one year.  I am a bit concerned about taking a steroid for such a long period of time.  I have heard that they can cause weight gain, etc. 

 

Does this sound like Addison's disease or are there other causes for cortisol insufficiency?

 

The fact that your cortisol response to insulin-induced hypoglycemia was low would be in keeping with adrenal insufficiency.  This problem can be due to destruction of the adrenal glands or to a problem in the pituitary gland that controls the adrenal gland by its production of ACTH.  Usually, ACTH is measured along with cortisol during the insulin test and this helps to determine the cause of the problem.  The MRI is done to visualize the pituitary, if there is any concern that you could have a pituitary problem.  I am glad that you are going to talk to your endocrinologist to find out exactly what was found during testing.  If it was shown that you have adrenal insufficiency, the treatment is usually lifelong.  Your endocrinologist will follow you, be sure the dose is correct and you should not gain weight.  If the problem is in the pituitary gland, you would require other investigation and treatment.  It is important to discuss the tests and the treatment with your endocrinologist so you truly understand the cause and the management of the problem, so that you will be able to make the right decisions if you have any problems in the future.

 

I have been feeling unwell for months.  I am extremely tired/weak (I normally love running and going to the gym).  I tend to get out of breath, despite decent physical conditioning.  I haven't been able to eat lunch for a couple of months as I am so nauseous, but it passes later in the day and I eat in the late afternoon/evening.  I have unintentionally lost about 15 pounds in the last 2 months.  I do not think I have dark skin, but I do have the same sort of blotchy complexion on my face that my sister had when she was pregnant.

 

I have gone to the doctor.  My bloodwork has been fairly normal.  Once my K was high, but it came back to normal.  My AM cortisol level was 143 nmol/L.  Seeing as that's in the normal level, I was told that it wasn't my adrenal glands.  My TSH was slightly elevated once (5.22) but quickly came back to normal.

 

I have been told that I must be depressed.  I would accept that diagnosis if I only felt sad, or had a loss of interest in activities, etc.  As far as I can tell, my only symptom of depression is fatigue.

 

I stumbled across the Addison disease association website and it's the only thing that makes me feel normal.  I have no idea what my problem is, but I was wondering if you think that my symptoms could match at all to Addison's?

 

It is always frustrating when we can not seem to get to the bottom of a problem. In adrenal insufficiency, the lab tests are often normal in the early phases of the disease. The cortisol of 143 nmol/l has to be interpreted based on the time of day that it was taken. For a morning sample this value is on the low side. For a late afternoon sample, it would be normal. A morning cortisol over 300 nmol/l would be against a diagnosis of adrenal insufficiency, but the best way to test for it is to measure both cortisol  and ACTH on a morning sample. If there is any uncertainty, cortisol can be measured before and after the injection of ACTH. This last test is usually done by an endocrinologist.

 

The fact that your tests have been changing at different times raises the possibility that you might have had a virus infection affecting your thyroid.  These tests generally return to normal as the infection clears.

 

Keep trying, hopefully you will get to the bottom of the problem before long.

 

I haven't been able to get a reply from my endocrinologist re: the medical advisor’s recommendation; however, her initial recommendation concerning my UFC cortisol was: 15 mg morning / 10 mg evening.  I've been trying the medical advisor’s recommendation for 2 days now:

15 mg am / 5 mg lunch / 5 mg evening.

 

I have occasionally felt a bit lightheaded and my pulse seems to race when I go from sitting to standing.  However, my blood pressure seems to be fine in the 100/110 over 75/65 range.  Will it be more difficult for the body to adapt to the lowering and the timing difference or can it adjust easily to both changes?

 

Will there be a period of adjustment and how long will it be before I start feeling more "normal" at the lower dosage and timing.  I did have difficult sleeping last night and am wondering whether the change in timing could affect my sleep as well?

 

It is good to see that you are trying different routines for your cortisol dosing.  Most patients with Addison's disease are also taking Florinef and this is the major factor in controlling blood pressure.  It is important to be sure that you are on an adequate dose of Florinef.  The best test for this is a plasma renin.  This can be done through your family doctor or endocrinologist.  The usual dose is 0.1 or 0.2 mg per day.  If your dose of Florinef is not right, it is more difficult to regulate cortisol. 

 

CORTISONE MEDICATION

I have recently been diagnosed with Addison's disease after being ill for 4 or 5 years. The brown pigmentation of my skin was the symptom that eventually led to the Addison's diagnosis. During that period I lost about 15 pounds, and now weigh 97lbs. I also lost a great deal of muscle mass and have very little strength. I have been taking 0.1 Florinef and 0.5 Dexamethasone for about three weeks. The other day I went out for a half-hour walk, and found it quite tiring, but I was kept awake all night by the twitching of my leg muscles. Is this a problem that can be addressed by adjusting my medication or can I expect it to resolve itself through getting used to the medication, or further exercise?

 

It is good that your diagnosis has been established. Once the doses of your medication get stabilized you should gradually regain your strength and energy and regain your lost weight. Most endocrinologists prefer hydrocortisone rather than the dexamethasone as the glucocorticoid replacement but there is room for discussion. The argument for dexamethasone is that it is long acting and only has to be taken once per day. Since it does not provide the normal fluctuations in glucocorticoid levels throughout the day, even doses that seem in the physiological range usually result in over treatment because the cells in the body are exposed continuously to glucocorticoid. The argument for hydrocortisone is that it is the hormone that the adrenal gland normally produces and is metabolized fairly rapidly. This means that the cells in the body are normally exposed episodically to varying levels of hydrocortisone throughout the day. Hydrocortisone replacement is usually given twice or preferably three times per day with the largest dose in the morning and smaller doses at lunch and in the late afternoon or at dinner. Usually the total dose is 20 to 30mg. "The smallest dose that makes you feel well is the best dose." You should always be sure to discuss your treatment with your family doctor or endocrinologist because each person has different needs and in some cases, other medications can effect the rate of metabolism of hydrocortisone.

 

I have been told that changing brands of drug might affect the effectiveness of my replacement medications. Could you please comment?

 

Substitution of drug preparations: Pharmacists will generally give you the least expensive preparation of a drug unless there is a specific request for no substitution. Different brands or generic versions of drugs may have slightly different binders, fillers, coatings, and densities. This might affect your absorption rate. I am not aware of any studies looking at the bioavailability of different preparations of hydrocortisone (cortisol), cortisone, or prednisone from different manufacturers, but it is generally good practice to stay with the same preparation to avoid possible differences in pill content. If you have switched brands and have symptoms of glucocorticoid excess or deficiency, discuss this with your doctor so proper adjustments in dosage are made.

 

I have Addison's disease, celiac disease, vitiligo, Hashimoto's thyroiditis, early menopause, Type II Diabetes, hypertension and LDL of 120. For years I was on 50mg. hydrocortisone. More recently (10 years) i have been on 15mg Cortef daily. I also take 0.1mg fludrocortisone, 16mg Atacand, 0.125mg Levoxyl and 81mg Aspirin every other day. My doctor also wants me to take 1/2 tablet 10/40 Vytorin. Would less fludrocortisone help lower hypertension without the use of antihypertensives? My blood pressure still runs in the 140/80's even on Atacand.

 

You have almost the complete spectrum of autoimmune endocrine problems, but it sounds as if you are doing well and are being well looked after. Your doctor wants you to start the Vytorin because your LDL cholesterol is higher than it should be in someone with Diabetes. Blood Pressure of 140/80 is a little high and the suggestion to lower the dosage of Fludrocortisone is a reasonable one. The dose of Fludrocortisone varies from 0.05 to 2.0mg per day so you should discuss this with your doctor. Whether this is a good idea or not depends on your past treatment experience.

 

My grandmother, with whom I have been very close, became ill, was hospitalized and underwent surgery. One month later she died. The whole period has been very difficult for me and I have felt unwell throughout. Should I be taking extra cortisol?

 

You should monitor yourself, and you may need to increase your cortisol by 1/2 to 1 tablet daily during times of highest stress.

 

I was wondering about exercise, Addison's and energy levels.  I know that if you are"normal" and you exercise, your cortisone increases and your energy in turn increases.  What happens when you have Addison's (or no adrenal glands) and you exercise hard?  Is your cortisone used up?  Does an Addisonian have more energy after exercise (like a normal person)?  I have noticed recently that when I have a good workout (e.g. - sweating a lot), that afterwards I feel sick.  I try to eat something with a lot of salt, like pretzels, but this nauseated feeling doesn't go away until much later.  So, my question is, if a person who has Addison's exercises hard, should they be taking more cortisone?

 

If you are going to be doing hard exercise you should take less medication in the morning i.e. Prednisone 4 mg. in the morning and 1 mg. before exercise. (5 mg. Prednisone = 25mg. cortisone acetate = 20 mg. hydrocortisone).  Salt and fluids are lost and should be replaced.  Be sure you are replenishing fluids, sugar and salt so you are not getting dehydrated.  Salt tastes will change according to need i.e. heavy exercise, cross country skiing, in a sweaty hot environment, premenopausal and sweating will also cause water and salt loss.

 

My daughter was diagnosed with Addison's in 2003. She was on Cortef (now on Prednisone 5 mg a day) and Florinef (now fludrocortisone 0.1mg 1 in am and one half in pm).  She has had weight gain and thinning skin with the increased dose of fludrocortisone.  The "stretch marks" are becoming severe, spreading below the elbows and appearing on her knees, as well as all over her body.  We believe her dose is too high but her endocrinologist says no.  Is there another medicine that will control the salt balance and keep her blood pressure up without these side effects?

 

In general, Florinef (fludrocortisone) does not cause symptoms such as stretch marks.  Fludrocortisone is responsible for salt retention which in turn affects blood pressure.  The best test to determine if the dose of fludrocortisone is satisfactory is a plasma renin.  This is peptide released by the kidney in response to blood pressure and blood flow through the kidney and is very helpful in assessing the dose of fludrocortisone required.

 

Stretch marks are generally due to thinning of the skin caused by too much glucocorticoid (prednisone or cortisol).  The dose requirement for glucocorticoids is variable from one individual to another and studies of cortisol production in non Addison's individuals has shown that the production can be lower than we previously thought.  The best way to avoid stretch marks is to use a short acting glucocorticoid (cortisol) with the smallest dose that allows the individual to feel well.  This can be as low as 15 mg of cortisol in some individuals.  You should always discuss changes in cortisol doses with your endocrinologist. 

 

Should I be concerned about recent lab work I had done, with the result showing a high reading of 51 ACTH, as well as a high reading of 829 cortisol?  My GP said to wait and discuss it with my endocrinologist, whom I don't see for another 4 weeks.

 

I am assuming that you have Addison's disease and that you are taking cortisol (cortef) as your glucocorticoid replacement.  When ACTH is measured on a morning blood sample, the levels are almost invariably high.  The upper normal level for ACTH in most labs is 10 pmol/l and levels of 30 to 75 are usually found on a morning sample before taking the cortisol.  The cortisol level is usually low in the morning before taking the cortisol and peaks 1 to 2 hours after taking the medication.  The normal range after taking medication is up to about 600 nmol/l depending on the lab, but this can be affected by the protein that carries cortisol in the blood.  The commonest medication that affects this protein is estrogen found in the birth control pill or in hormone replacement therapy.  Under these circumstances, cortisol levels can be up to 1000 to 1200 nmol/l.  The cortisol that is bound to the protein is not active so if you are taking the appropriate dose of cortisol there should be no problem.

 

I have Addison’s - my adrenals bled out internally from heparin and fragmin(?).  Should a person take an herbal adrenal support?  I’ve been taking 25mg cortisone acetate with breakfast and 12˝ mg cortisone acetate at supper, plus Florinef 0.1mg every other day since December 2004.  Should I be on 20mg of hydrocortisone divided throughout the day?  I’m tired, my hands and feet bones are becoming weaker, eyes etc.

 

The dose of cortisone acetate and Florinef that you are on would be considered a reasonable replacement dose and the twice a day dosage is appropriate.  In most European studies, virtually all of the individuals are on cortisol rather than cortisone, but theoretically, since cortisone is converted to cortisol, this should not make much difference.  The general rule is that the lowest dose that makes you feel well is the right dose for you.  It depends on several factors including size and weight.  You can discuss with your doctor the possibility of lowering the dose of cortisol to 25mg daily.  Taking 12.5mg in the AM, 6.25mg (1/4 tab) at lunch and 6.25mg in the afternoon.  Depending on age etc., it may be worth checking your bone density.  Once again, check this out with your doctor.  There are no herbal preparations that can replace your adrenal hormones.

 

I'm 44, diagnosed 30 years ago, my daily dosage is: 25mg cortisone acetate morning, 12.5mg evening, and 0.1mg florinef.  I lived in D.R.Congo for 5 years in my late 30's.  I was unable to see an endocrinologist during this time.  The constant level of stress coupled with my frequent discovery that I'd skipped my evening dose led me to increase my cortisone intake to 50mg daily.  After returning to Canada, my endocrinologist urged me to drop back to my original dose of 1.5 pills/day, and sent me for bone scans.  He warned that it would take awhile to adjust to lower cortisone intake because the body becomes accustomed or 'addicted' to the dose it receives.  I didn't have any crises, but my energy levels were low for several months, and I had cold/flu symptoms all winter.  With a history of crises during hormonal adjustments in my body (puberty, pregnancies and pre-periods), I'm cautious as I approach menopause years.  I'm keen on preventing osteoporosis, yet I'm nervous about how my body would handle a further reduction in cortisone intake.  Are Addison patients recommended to gradually reduce cortisone intake as our bodies slow down?  Should I be considering this?  I take calcium supplements - is there a recommended dosage for adult female Addison patients?

 

The average dose of glucocorticoid is 37.5 mg of cortisone or 30mg of cortisol (hydrocortisone).  The dose is usually taken twice a day as you are doing, but it is probably better to spread it out to three times a day e.g., 12.5/12.5/12.5.  The dose requirement is quite variable from individual to individual so a dose of 25mg cortisone daily is not unusual.  This is related to the fact that tissue receptors for cortisol vary from person to person.  We always say that the right dose of cortisol or cortisone is the lowest dose that makes you feel well.  It is also important to be sure that the dose of Florinef is also optimized.  The best way to do this is to have your doctor measure your plasma renin.  When you change doses of cortisone, it is not unusual to feel less energy for a while, but remember, we all feel better some days than others, so don't blame everything on the cortisone.

 

CHILDREN

TEETH

My 8 year old daughter has Addison's disease. She takes Cortef three times a day by chewing the pills. Her teeth always look like she does not brush them, even though she does, and they have white spots on them. Could this be because of the Cortef?

 

Before making any comments about the white spots on your daughter's teeth, I would like to hear what her dentist has to say. Since I don't have that option, I will suggest some possibilities, but emphasize that your dentist should see these spots to determine what part of the tooth is involved. My first thought is that in this age group, there is a high incidence of systemic candidiasis associated with adrenal insufficiency (Addison's disease). This candidiasis is a monilial (fungal) infection that shows up as white spots usually on the tongue and inside of the mouth. It is possible some of this material could appear on the teeth. The fact that she is chewing the cortisone could make her more susceptible to this infection if it is not being washed down well with water after chewing. Children with Addison's disease frequently also have a deficiency of parathyroid hormone (hypoparathyroidism). This can result in defects in the calcification of the teeth as they develop. This can be detected with blood tests for calcium, phosphorous and parathyroid hormone. A third possibility could be too much fluoride. All of these suggestions require the expert advice from your dentist and your endocrinologist.

 

DEXAMETHASONE

When switching a patient from one steroid to another (i.e. 0.5mg Dexamethasone to 5.0mg Prednisone), do you suggest weaning? What would you recommend as the best course of action?

 

0.5mg of Dexamethasone is a little more glucocorticoid than 5mg of Prednisone. I would suggest stopping the Dex and then starting with 7.5mg of Prednisone (1 tablet a.m., ˝ tablet p.m.). If all is going well, consider stopping the p.m. half tablet.

 

Why do you not prefer your patients to take dexamethasone, and instead prefer they take cortisone?  I have read that dexamethasone stays in one’s system for 24 hours and thus may make someone feel better.

 

Your question about taking dexamethasone for glucocorticoid replacement is a logical one.  The body normally secretes hydrocorticortisone (cortisol) in small bursts throughout the 24 hrs.  The bursts are more frequent starting about 4 AM so that the blood level of cortisol is highest when we get up in the morning.  The timing of these bursts is governed by the time we usually rise in the morning.  During the day, the bursts are less frequent, so the average blood level falls throughout the day and is lowest around midnight.  These fluctuations in blood levels of cortisol are important in providing adequate amounts of cortisol to the cells without causing excessive exposure.  The timing also helps to control blood sugar levels and causes a release of sugar from body stores when it is needed.

 

Dexamethasone is very useful in situations when continuous glucocorticoid levels are required to suppress inflammation and some other problems, but the continuous exposure of tissues to even moderate doses of dexamethasone over time frequently results a condition of glucocorticoid excess.

 

By using cortisol in doses spread throughout the early part of the day, we try to mimic to some degree the normal secretion of cortisol and avoid problems such as excessive weight gain, easy bruising and elevated blood sugar.

 

EATING DISORDER

I was diagnosed with an eating disorder July 2006.  I was running 11 miles a day, eating less than 500 cal of non-carbohydrates and got down to 80 lbs.  They wanted to hospitalize me but I wouldn't let them because how could I start eating if I didn't run.  I started to become more restrictive during the day to save up for one thing I really wanted to eat and to make this okay in my mind I ran 15-20 miles a day.  In Oct 2006, I ran a marathon, and after I did that, my face blew up.  It was so swollen.  They thought it was refeeding edema but the tests didn't confirm that.  I slowly started to eat more of healthy foods but the weight kept on creeping up even though I was still running 10 miles a day.  They were baffled.  I went to a naturopath in Aug 2007, and she diagnosed me adrenal insufficiency and hypothyroidism.  I have been on 1 gram of thyroid armour and an adrenal herbal tincture.  I am running 6-8 miles a day and lift 2-3 times per week but I can't seem to get the weight to come off.  I don't understand why my body can't work like they say it should.  Do you have some sort of answer as to why I still have this intermittent facial edema and weight I can't get off unless I take extreme actions?

 

There are many aspects to your problem(s) and I don't think I have enough information to make specific comments.  You did not mention your current weight after being down to 80 lbs. nor did you mention the type of food intake at present.  The facial swelling has me stumped for the moment.  I am concerned about the diagnosis of adrenal and thyroid insufficiency.  To accurately make these diagnoses requires specific testing because there are different causes of both these problems and the treatment is influenced by the cause.  I think you should have your family doctor send you to an endocrinologist to check this out.  Both of these diagnoses require lifelong treatment so you do not want to make them without being certain of accurate investigation.

 

With diets that are restrictive in calories, there is always a concern about adequate vitamin intake.  I am sure you have been taking care of this, but I thought it is worth mentioning.  The other concern is adequate protein intake, particularly proteins containing the essential amino acids.  Some vegetable proteins do not contain all of the essential amino acids.

 

EMERGENCY

Do you recommend that your patients carry steroids in an injectible form in case of an emergency?

 

As you know, there is no ideal portable injectible steroid. The most satisfactory preparation is Solu-cortef which comes in a bottle with dry powder and the solvent which can be easily mixed and then drawn up in a syringe for intramuscular or intravenous injection. This combination of 100mg of Solu-cortef and a syringe (10 cc) and needle would be handy if someone were traveling to an out-of-the-way spot. Most emergency departments would have this and they would also give about 1 liter of saline with it.

 

I have a question about the emergency kits that people were talking about.  Are they prefilled syringes like the Anakit or is it a multidose vial and a syringe?  What is the name of the medication used?  Is there a patent name for the Kit?  I see an internist not an endocrinologist, and neither my doctor or pharmacist knows what I am talking about.  Do you know of a website or other place where I can fine out when to use it?

 

Sorry if there is some confusion about the injection kit.  There is some information on our website about its use (http://www.addisonsociety.ca/injection.html, http://www.addisonsociety.ca/emergencyproc.html).  The kit has to be put together from its components and is not sold as a kit.  It consists of:

Solu-cortef 100mg Act-o-vial

3ml syringe with a 20 or 22 gauge needle

alcohol wipes

 

The instructions for mixing the solu-cortef in the vial should be included in the package.  You have to ask your doctor for a prescription for these items and you can package them together so the components will not be hard to find.

 

The reason this does not come already prepared is that the solu-cortef is not stable in solution after mixing.

 

You should let your travelling companions know that you have this kit with you and they should be shown how to use it if needed.  The kit is not much help if no one knows how or when to use it.  If you are staying away for a prolonged period, you may want to take more than one kit with you depending on the destination.

 

You should also have a letter with you from your doctor that says that you have Addison's disease and that you are carrying this kit with you for emergency purposes, so that you don't have any problems at customs.

 

It will not be surprising if your doctor is not aware of this kit.  It is only in the last few years that it has been discussed and she/he may not have any other people with Addison's disease.  If you have any problems, you can copy some relevant information from the web site and take it to her/him or you can direct her/him to the web site.

 

FLU VACCINATION

I have recently been diagnosed with Addison's disease.  Should I get a vaccination against the flu?

 

Individuals have different views about getting the flu vaccine. The fact that you have Addison's should not alter your opinion.  If you are on appropriate replacement medication, your immune response to the flu vaccine should be normal and you will get normal protection from this year's brand of the flu.  It is important to remember that each year new strains of the flu evolve so your protection will not be absolute but vaccination will reduce your chances of getting the flu.

 

HERBAL MEDICATIONS

Can I substitute my medications with natural products such as herbs?

 

There are no herb or naturopathic medications that will replace the medications required for treating Addison's disease. Getting the right dose is the important thing.

 

I have Addison’s and I am on 15 mgs of Cortef a day.  I am wondering about taking an herbal product called Cold FX that stimulates the immune system, to help with the common cold. 

 

COLD-FX is a specific extract of North American ginseng that is marketed to decrease the frequency and severity of symptoms of the common cold.  The available studies have been carried out on healthy volunteers and individuals taking corticosteroids were excluded from the study.  This exclusion was most likely designed to exclude individuals taking large doses of steroids as treatment for an underlying disorder and rather than individuals taking physiological

doses as is used in Addison's disease.  There is however no information about its use in individuals with Addison's disease.

 

This is a patented over-the-counter medication and the active material and the mechanism of action are unknown.  The clinical studies of its beneficial effects are limited.  Since the common cold is a self-limiting problem, it is best to avoid potential complications of taking a compound which is not well defined.

 

Remember, you should increase your hydrocortisone (cortisol) by 1/2 to 1 tablet per day when you have a cold.

 

I have been taking hydrocortisone 10 mg for 6 years.  Lately, I have developed osteopenia, and I feel it is because of the hydrocortisone.  If so, can you suggest any herbal replacement?

 

It is always reasonable to ask whether medication that we are taking could be responsible for new problems that come up.  I am assuming that you have been diagnosed with adrenal insufficiency and that is why you are taking the hydrocortisone.  The adrenal insufficiency can be primary, due to a problem in the adrenal glands, or secondary, due to a problem in the pituitary gland.  If the problem is in the adrenal gland, the dose of hydrocortisone (10mg) that you are on is a relatively low dose and is unlikely to be a factor in your osteopenia.  If the problem is in the pituitary, the dose of hydrocortisone is still relatively low and should not cause osteopenia, but there may be other pituitary problems that could contribute to the situation. 

 

If you have adrenal insufficiency, there are no herbal medications that you can take that will replace the hydrocortisone.

 

Osteopenia is common in the general population and can be due to multiple factors including diet, activity, age, exposure to the sun (vitamin D), and smoking.  The dietary intake of calcium and vitamin D are particularly important.  It would be a good idea to review these factors with your family doctor or endocrinologist.

 

HYSTERECTOMY

My Addison's was diagnosed in 1998 and I am now facing a subtotal hysterectomy and removal of one ovary.  Are there problems with combining Hormone Replacement Therapy with Addision's medications?  (I also take Synthroid).

 

There is no problem combining hormone replacement therapy (in this case estrogen alone) with medication for Addison's disease or thyroid medication.

 

MEDICAL / DENTAL PROCEDURES-MEDICATION

DENTAL

I recently saw my dentist who suggested that I need to have my wisdom teeth removed. He is going to do this in the office using general anaesthesia. What should I do about my cortisol?

 

100mg of Solu-cortef should be administered intravenously before the anaesthetic. You should ensure that the dentist is fully aware of your condition and its requirements.

 

STOMACH

I am having a gastroscopic exam and will be given a light anesthetic. Should I be increasing my 22.5mg of Cortef before this procedure and by how much? I previously had a colonoscopy with a light anesthetic and had to be brought out of the sedation because of a sudden drop in blood pressure. I want to avoid anything like this again.

 

You should really be discussing this with your family doctor or endocrinologist. It is a general rule that you should take added hydrocortisone during times of stress and there is no doubt that a gastroscopy is stressful. The question is how much more steroid you need for this particular stress. Since you had problems after your colonoscopy, you should take an extra 20mg tablet the morning of the procedure.

 

SURGERY

Is surgery out of the question for a person with Addison's?

 

There is no contraindication to surgery in individuals with Addison's disease. They do however require coverage with intravenous glucocorticoids prior to the anaesthetic and during the surgery. The important thing is to be sure that both the anaesthetist and the surgeon are aware that the individual has Addison's disease.

 

My daughter is in the hospital with appendicitis. The surgeon is going to operate and says that she will be in and out so quickly that she does not need to be given extra cortisol. Should I accept the surgeon’s opinion?

 

Any surgery or any general anaesthetic will require IV Solu-cortef regardless of the length of surgery. However, too much cortisone can decrease healing, so do not continue “extra” longer than truly needed

 

MISCELLANEOUS

BLOOD AND ORGAN DONATIONS

There has been much discussion about blood donation and organ donation of Addisonians from different parts of the world. Can we as Addisonians in Canada give blood and/or donate organs?

 

As far as I am aware, there is no restriction regarding these donations. Some Addisonian patients may be anaemic (low hemoglobin) and this may prevent them from donating blood but otherwise there should be no problems

 

CHANGE OF DOCTOR

The doctor who treated me for Addison's has left and my new doctor says I'm taking too much of one of my pills, what should I do?

 

If you have not seen an endocrinologist about your Addison's disease it is important that you ask for a referral. If there is any question about the dose of any of your medications, it should be discussed with your endocrinologist. If you have seen an endocrinologist in the past, just give him/her a call.

 

IMMUNIZATION-HEPATITS

I'm curious about whether I should be getting the hepatitis immunization shots that are being offered by the organization I volunteer with. These shots would take place in January or February. From what one of the nurses said, they will not provide hepatitis immunization to anybody who is immunocompromised.

 

This question that is particularly relevant right now since we are all being asked to get flu shots. The nurses giving the injections have to be sure that the recipient is not allergic to material in the immunization injection, or if they have breathing problems and are using an inhaler, that they have the inhaler with them. Individuals with Addison's disease are not immuno-compromised and should respond normally to the hepatitis immunization. The only situation where this may not be true would be if they had a problem requiring larger doses of cortisol or prednisone. If this were the case, they should wait until the problem is over and then go ahead with the immunization once they are back on maintenance doses of their steroids.

 

INFERTILITY

I have had Addison's for over 12 years. I'm thirty, but went into menopause in my early twenties. I don't have children but would like to know if it is at all possible to conceive. I have been told that a donor egg may be a possibility. What are my options?

 

The answer is yes, it is possible to conceive. But, you would have to see a gynecologist who specializes in fertility problems. The first problem would be to find an egg donor, and there are a variety of factors that should be discussed with your gynecologist about this. The other steps involve preparation of your uterus with appropriate hormone treatment and fertilization of the donor egg in vitro before placing it into the prepared uterus. Each of these steps require the direction of a gynecologist who specializes in this area. There are many factors involved in this situation and my simplified description may have overlooked some factors in individual cases. These can be covered by your fertility expert.

 

THIRST

My friend's biggest issue is an unquenchable, unrelenting thirst throughout the day and night. Awakes several times each night to drink water and urinate. It's difficult to sleep leading to extreme fatigue. Muscle spasms and high/unstable blood pressure are also issues. She also has Hashimoto's Thyroidtis and pernicious anaemia. Amaloride and Vasotec were discontinued after diagnosis of Addison's disease. Something just is not right in her medications mix maybe contributing to thirst.

 

Your friend has recently been started on cortisol for Addison's disease and is now thirsty. When someone presents with increased thirst and increase in urination, the first question would be "what is her blood sugar?" This is particularly relevant because she has recently been started on cortisol in a fairly large dose and this could bring out a latent tenancy for diabetes. Hashimoto's tyroiditis and pernicious anaemia are autoimmune diseases as is Addison's disease so they frequently are present in the same individual.

 

NON CORTISONE MEDICATION

I just went from cortef to 75ug dexamethasone. So far I feel really good, with no highs or lows and good energy all day. Is 75ug a reasonable replacement?

 

The 75ug dose of dexamethasone is higher than a normal physiological replacement of cortosol. Dexamethasone is long acting (24 hrs) versus (90 min)with cortisol, it is difficult to precisely compare doses as I don't know what dose of cortisol you were on before the change. Between 25 and 50ug of dexamethasone is roughly equivalent to 20mg of cortisol, so 75ug of dexamethasone would be equivalent to about 50mg of cortisol. This is a large dose and because of its long duration of action, it tends to be more likely to result in side effects of too much glucocorticoid. You may be feeling so well because you are getting a higher dose of glucocorticoid than normal. This seems good in the short run, but may not be good in the long run. I prefer not to use dexamethasone for replacement in Addison's disease.

 

I was recently diagnosed with Addison's and take 20mg Cortef daily, and also take 150mg Synthroid for hypothyroidism. Can one take prescription Lortab with Cortef?

 

Lortab is a trade name for hydrocodone, a drug related to codiene. It's used to treat severe pain problems and is generally used for short periods of time because it can be addicting. It can cause dizziness and individuals with Addison's disease may be more susceptible to this, but I am not aware of any specific contraindications. Your pharmacist should be able to give you a printout for hydrocodone including the side effects and contraindications. It is not a drug that I would normally recommend, but your family doctor may have a specific reason to suggest it in your case.

 

Because I have Addison's, I have been doing some personal research regarding Addison's and the adrenal glands. and have read of taking raw adrenal glad pills to rebuild the adrenal glands and taking Tyrosine pills. Is this actually possible? Also, I'm on a new treatment with Andriol (testosterone pill), which is supposed to raise my DHEA level. I started with three 40mg pills a day, but cut down to two because my mind was racing at night. Can I expect some long-term side effect from this medicine, or would I be better off taking DHEA pills instead. The Andriol does seem to help me heal more quickly.

 

If you have Addison's disease, it means that your adrenals have been damaged by some process, most commonly an autoimmune process in which antibodies destroy the gland. Other possibilities include infections or hemorrhage. In all of these situations, the gland cannot be "rebuilt". Taking pills containing adrenal tissue obtained from animals will not do anything to improve your own adrenal tissue. Tyrosine is an amino acid which is important, but is readily available in our usual diet. Taking extra will not affect adrenal function. The question regarding testosterone is less clear. Whether or not testosterone will help depends on what your basal testosterone level is. One thing that is clear, is that testosterone will not increase DHEA levels. In studies in which DHEA has been given to women, it will increase testosterone levels but DHEA in the usual doses does not have a significant effect on testosterone in men. Testosterone given to men who are truly testosterone deficient will improve protein and muscle development. Since it is so important to know what your hormone levels are before taking additional hormones, you should have some testing done by your endocrinologist.

 

Is Prednisone any different than Medrol on the ACTH suppression on the Pituitary, given the equivalent doses, i.e. 6mg of medrol and 7.5mg of prednisone, or 30mg of hydrocortisone?

 

Medrol is the trade name for methyl prednisolone, it is a little more potent than prednisolone, but at appropriate doses, all three steroids have about the same pituitary suppression. Cortisol is a little shorter acting, so depending how frequently it is given, it may have slightly less suppression of the pituitary. Prednisone and methyl prednisolone are frequently used to treat inflammatory problems such as colitis or some kidney problems because they cause less salt retention and have more potent as anti inflammatory activity than cortisol. They tend to be used in larger doses in these situations and therefore can cause greater pituitary suppression.

 

I was diagnosed with Addison's disease in 1992. I have always been told that I shouldn't take anti-inflammatory medication, can you tell me why? I am currently suffering from muscle spasms. I have been prescribed Baclofen vs. an anti-inflammatory.

 

Anti inflammatory medications can cause stomach irritation and ulcers. These are the major side effects of non steroidal anti inflammatory drugs. People who are taking steroids such as prednisone for the treatment diseases such as arthritis, are more susceptible to these side effects. In Addison's disease the dose of glucocorticoid is physiological (within the normal range) rather than pharmacological (exceeds the normal range for treatment purposes) so the increased probability of stomach problems in quite low. In a situation where anti inflammatory medications are indicated it is important to be aware of possible side effects but I would not hesitate to use nonsteroidals. It is important to be sure that the drug is being used for the proper indications. This family of drugs is very helpful to treat inflammation, but is not likely to do much for cramping or spasms.

 

I was diagnosed with Lupus about 8 years ago.  Now the doctor says I have Addison's.  He changed my prednisone to cortef.  I want to know how prednisone is equal to how much cortef.

 

It is interesting that you were switched from cortisol to prednisone when you were diagnosed with Lupus.  Usually, it is the other way around since the dose of steroid needed to treat Lupus is usually higher than the dose to treat Addison's disease.  Prednisone has less tendency to cause salt retention than cortisol, so it is used when higher doses of steroid are needed.  The usual dose comparison is 5mg of prednisone is roughly equivalent to 20mg of cortisol or 25mg of cortisone.

 

PROZAC VS ZOLOFT

What is the difference between Prozac and Zoloft and which is better for Addisonians?

 

Prozac and Zoloft are similar but are not identical drugs. They both block the re-uptake of serotonin in the brain. I am not aware of any data proving one is better than the other in Addison's patients. Theoretically there should not be a difference.

 

SALIVARY STEROIDS

How accurate is the salivary testing for steroids and is it available in Canada?

 

Measurement of salivary steroids has been used with some success, particularly by a group in Wales. It has not received much interest because it is difficult to standardize so I am not aware of any groups that are using this technique in Canada or the U.S.

 

VITAMINS

Do you know of any reason why anyone with Adddison's Disease should not take a vitamin B supplement?  I take a multivitamin which has very little B so I increase it with B 50.

 

There is no problem with taking vit B supplements.  I am not sure what is in B50 but as long as it is only B vitamins, it should be OK.

 

OTHER MEDICAL CONDITIONS

ABDOMINAL PAIN

I have recently been diagnosed with Addison's disease, and experienced severe abdominal pain (and inflammation), in the same spot, every day. Is this normal?

 

It is difficult to be specific about your question regarding abdominal pain. It is not usually a symptom of Addison's disease itself, but some individuals may also have gastrointestinal problems which are autoimmune, so they are seen with increased frequency in individuals with Addison's disease. It is important to find the cause of the abdominal pain since analgesics may mask the true cause of the problem. It is best to review this with your family doctor or endocrinologist. The location of the pain, the presence or absence of diarrhea and things that aggravate it or make it better, will all help them in determining what could be the cause.

 

ANEMIA:

In the last month I seem to have developed an intolerance to alcohol.  About 5 minutes after drinking alcohol, my face breaks out in blotches starting around my eyes, nose and mouth which then spread across most of my face.  The rash is a reddish purple and lasts for about 20 to 30 minutes.  My face felt very warm during these episodes, but not itchy, and I did not have trouble breathing.  I reacted to gin and tonic and white wine.  Lately I have been feeling tired and 'foggy' and seem a bit off balance at times. I have scheduled appointments with my GP and endocrinologist, but do you have any suggestions of what could be causing this reaction?

 

Do these symptoms ever appear with pernicious anemia?

 

I have: hypothyroid (1979), vitiligo (1983), Addison’s (1998), hypogylcemia (1999).  My medications are: Cortef (15-20 mg), Florinef (0.05 mg), Synthroid (0.112 mg) and Estrace (1.5 mg).  My hypoglycemia is diet controlled (no meds).

 

I had an abdominal total hysterectomy and oopherectomy (due to severe endometriosis) in June and started the estrogen therapy right away.

 

I took  calcium citrate for a few days before the first alcohol reaction, but have discontinued that for now.

 

The symptoms that you are describing sound much like a deficiency of a liver enzyme that metabolizes alcohol resulting in the release of a metabolite that causes the flushing.  This is usually a hereditary problem but possibly could develop later in response to some liver insult.  I am not aware of this problem being associated with the series of autoimmune problems you have described.  The fact that you have not been feeling well recently makes me wonder if you could have a mild viral infection which could be contributing to your current problem.

 

CELIAC DISEASE

I have had Addison’s Disease and low thyroid  for 23 years. One of my nieces has been diagnosed with celiac.  Now a grandniece is still undiagnosed with abdominal problems.  There has been some writing in our newsletters regarding a possible relation (for lack of a better expression) between Addison and celiac.  Please refresh my memory or refer me to some writings.

 

Celiac disease is an autoimmune disorder induced by gluten intake in individuals who are genetically predisposed to autoimmune disorders.  Addison's disease, hypothyroidism and type 1 diabetes are other examples of autoimmune disorders and, statistically, an individual with one autoimmune problem is more likely to have a second autoimmune problem than other individuals in the general population.  For example, the association between Addison's disease and Hashimoto's thyroiditis is quite strong, with up to 50% of Addison's patients have in both disorders.  The relationship between Addison's disease and celiac disease is not as strong, but is about 100x more likely to occur than in the general population.  If you want research information on the subject, you can go to the "Google scholar" web site and type in "celiac disease and Addison's" and you will find articles that may be of interest, although they will usually be rather technical.

 

I have seen many specialists over the past 2 1/2 years struggling with some type of endocrine disorder. I am taking florinef and midodrine to elevate my blood pressure. At this time I have been concerned with Addison's disease because of my symptoms. I have Celiac disease which is rampant on my maternal side of the family, and my cousin has confirmed diagnosis of Addison's disease. My question is this: I have undergone the insulin tolerance test and did not have a significant enough rise in cortisol level, nor did it reach a high enough number, yet the doctors are left baffled. I have passed the synacthen test (ACHT stimulation test) five or six times. How can this be? No one has been able to explain to me why the different results? Any information someone can provide would be helpful.

 

You have a family history of Addison's disease and Celia disease which makes you statistically more likely to develop an autoimmune disorder, than those in the general population, but it does not mean that you will develop one of these problems. The investigation as I understand it has shown a subnormal response to insulin induced hypoglycemia but normal responses to ACTH stimulation. The first question is to find out what your morning level of cortisol was. If it was over 300 nmol/l, the probability of adrenal insufficiency would be low. The next question would be to check and be sure that your blood sugar fell to a low enough level to cause ACTH stimulation (it should go down to about 2.5nmol/l). If there was a low fasting cortisol with a subnormal response to insulin, but the response to ACTH stimulation is normal, your endocrinologist would be looking at a possible pituitary cause for your low cortisol. Since I don't know your whole story, there may be other factors accounting for your symptoms. It is important for you to discuss your concerns with your endocrinologist so you can get her response to your questions.

 

CHOLESTOROL

What is the value of taking Pregnenolone? How does it compare to DHEA? Apparently it is not a restricted drug in Canada. It this true? What is the connection with cholesterol?

 

The adrenal cholesterol is converted to pregnenolone and the pregnenolone is converted to DHEA. The machinery required to convert pregnenolone to DHEA is primarily located in the adrenal, the ovaries and testes and possibly in the brain. Pregnenolone is popular because it is not restricted and because it is a steroid but as far as I am aware it has no biological effects.

 

CORNEAL TRANSPLANT

My 21 year old daughter and was diagnosed with Addison’s at the age of eight. During this time she has keep in relatively good health but has had several bouts of herpes simplex virus in her eyes which left her with badly scarred corneas leaving her with 7% left in the right eye and 33% in the left eye. She is to receive a cornea transplant and could you tell me what or if any complications could arise from this?

 

This is a 21year old female - diagnosed with Addison's disease at age 8 and now has visual problems due to scarring of her corneas from viral infections. The diagnosis at age 8 raises the possibility that she may have a syndrome in which there can be autoimmune involvement of other hormone producing organs and a tendency to have candida (fungal) infections in the mouth and gastrointestinal tract. It is unlikely that this would make her susceptible to the herpes virus infections, but it would be important to be sure there are no other associated problems before corneal surgery. The other autoimmune problems include hypothyroidism, hypoparathyroidism (problems with calcium), pernicious anemia (low hemoglobin), diabetes and vitiligo (patches on the skin with no normal pigment). If everything else is under control the corneal transplants should go well.

 

DIABETES

My father was diagnosed with Addison's years ago and has also developed diabetes. He has been losing weight since the diagnosis, but in the past couple of years, has dramatically dropped in weight to about 112lbs on a 5'8" frame. What can he eat that will help him gain but not effect his diabetes? Should he increase his cortef/cortisol? He is under a great amount of stress right now, so I did not know if more medication might regulate things better.

 

The combination of Addison's disease and diabetes presents two separate but interrelated problems. The Addison's disease should be treated with a combination of hydrocortisone (cortisol) and Florinef as in other situations. The lowest dose of cortisol that makes him feel well is the best dose although this may be a little hard to determine if his diabetes is not well controlled. First of all, he should be followed carefully by an endocrinologist. He should be on a standard dose of cortisol (eg 20mg AM, 5mg at noon and 5mg at 4PM) and Florinef depending on his blood pressure (eg 0.1mg). If he is losing weight while he is eating a reasonable diet, it is likely that his sugars are not well controlled and his diabetic medication may require adjusting. Since his weight is so low and he is still losing weight he probably requires insulin if he is not on it already. This is a complex situation so he must have these decisions supervised by his endocrinologist.

 

My problem is that I am on 15mg of Cortef and go to the gym 4 times a week and walk over 10,000 steps a day and am very careful what I eat because of my diabetes, but nothing is helping. I do all the exercise I can do, but don't know what else to do.

 

Being careful about what you eat does not mean that you are eating the number of calories that you require to lose weight. There are genetic factors that influence body weight so that the number of calories eaten by one person may result in weight gain while another person eating the same number of calories may actually lost weight. You have to cut back on your intake and increase your activity to find what works for you. As you cut back on your food, your blood sugars will come down so you will have to make adjustments.

 

I am struggling trying to keep my weight down as I am also diabetic and just newly on insulin.  I keep gaining weight.  I am on cortef.  What can I do?

I am on 15 mg of cortef, I go to the gym 4 times a week, walk over l0,000 steps a day, and am very careful what I eat because of my diabetes.  Nothing is helping.  I do all the exercise I can do, and don't know what else to do.  I will ask my specialist when I see her at the end of September.

 

I am assuming that you are on cortef because you have Addison's disease.  If you are gaining weight, there are a variety of possibilities:

1.         You are on more cortisol than you need.

2.         You are not as active as you should be.

3.         You are taking in too many calories.

 

The easiest of these possibilities is the dose of cortef.  The dose requirement for cortisol is variable from one person to another, usually between 15 and 30 mg per day.  The lowest dose that keeps you feeling well is the best for you.  Too much cortisol will also make your blood sugar more difficult to control so it is worthwhile taking a careful look at it.

 

Being careful about what you eat does not mean that you are eating the number of calories that you require to lose weight.  There are genetic factors that influence body weight so that the number of calories eaten by one person may result in weight gain while another person eating the same number of calories may actually lose weight.  You have to cut back on your intake and increase your activity to find what works for you.  As you cut back on your food, your blood sugars will come down so you will have to make adjustments.

 

I was just put on metformin for high glucose but don't know why.  it is high all of a sudden.  The metformin seems to be working but before that, I was gaining 5-6 pounds a week.  I also did a 24-hour urine test and the cortisol was in the limits but on the low side.  I am exhausted and everything directs me to Addison's.  Is it possible to gain weight with Addison's?

 

It is possible to have both diabetes and Addison's disease but it seems unlikely in your case.  A gain of 5 to 6 pounds per week suggests fluid retention, since it would require a very large number of calories to add that much weight in fat tissue.  If the sugar is not getting from the blood into the cells, one of the symptoms would be fatigue and this may take awhile to improve after the metformin has started to work.  Addison's disease is a possibility but unless there are other features to suggest this diagnosis, I would tend to focus on the treatment of the diabetes. 

 

FUNGAL INFECTIONS

I have been told by my family physician that because I take replacement cortisone, I am much more susceptible to fungal infections and that this is one things that we as Addisonians must be very careful of.

 

People taking cortisone or prednisone for reasons other than Addison's Disease are usually on high doses.  This can cause high blood sugars in some individuals and this will predispose them to fungus infections.  Individuals on physiological doses should not be more susceptible.  There is a childhood form of autoimmune endocrine disease that is associated with "systemic candidiasis".  This is a fungus infection that can involve the gastrointestinal tract.  This does not occur in adult onset Addison's disease.

 

HASHIMOTOS THYROIDITUS

I have had Hashimotos thyroiditus now for 8 years, and have only been able to get treatment in the past three with Armour thyroid.  I have had a lot of trouble getting the dose right, with many periods of hypo.  I increased to as much as 6 grains a day and was still hypo.   My doctor thought I was probably suffering from thyroid hormone resistance. However, with hormone resistance, the TSH should not be suppressed, and mine was.  I did some research on the internet and discovered that my adrenal glands could possibly be insufficient, so I ordered a 24 hour urine test (4X/day) and sure enough, my levels for all 4 were from 0-4 on a range to 20 I believe.  I stopped taking thyroid and took only cortef for about 2 weeks, increasing the dose until I felt better.  When I started on Armour again, I found I was much better able to tolerate it, with improvement in symptoms that nagged me for years (hair very brittle, severe hair loss, cystic acne, severe dry skin on legs and hands, insomnia...to name a few).  My question is this, I felt better on a dose of 25 - 35mg cortef a day.  Then the pharmacy put 10mg tabs in a bottle labeled 5mg. and I took approx 60mg cortef a day for a week before I noticed.  I actually felt better, lost weight, hair improved and so forth.  I lowered it immediately upon discover to 40mg a day (by the way, I divide my dose 3x/day).  I would like to get it lower and then stop eventually when my adrenals appeared to have healed sufficiently.  Are these doses all together too high?  I have not been diagnosed with Addison’s, yet find I'm taking as much or more cortef than those who have.  It scares me a little.  Also, when I go to have another 24 hour urine test for adrenals, should I take my dose of cortef that day or hold off?  Lastly, how can I know it's time to begin to decrease my dosage?

 

You have posed some interesting but difficult questions. Both your thyroid situation and the adrenal problem are not straight forward. You should be discussing these questions and lab results with your endocrinologist. There are several types of thyroid resistance so even with a suppressed TSH, it would still be a possibility. The Armour thyroid medication contains more T3 than T4 so the blood results can be difficult to interpret if this is not taken into consideration. I am not sure how to interpret you urine cortisol results. If you are going to do more urine cortisol tests you will have to be off medication for at least 48 hrs before starting collection. This is a complex series of problems which needs the expertise of an experienced endocrinologist.

 

HORMONES

I was diagnosed with Addison's when I was 12 years old. I am now 46. I have been taking Cortef 10mg TID and Florinef 0.1mg "OD" since I was 20. Two years ago I started to show signs of peri-menopause. I recently found a book stating a "normal" person would produce extra hormones from the adrenal glands since the ovaries decrease production while going through menapause. My question is how much extra Cortef should I be taking? I have also been having problems with increased BP, is this related to the menopause?

 

The comment that you heard stating that the adrenal increases its hormone output after menopause is not correct. At menopause, the ovary stops producing estrogen but continues to produce androgens for 1 to 2 years. The adrenal continues with its usual hormone output of cortisol, aldosterone and some weak androgens (DHEA and androstenedione). These weak androgens can be converted to estrogens in fat tissue. The conversion is small -- about 1%, and this contributes to the estrogen production after the menopause. No change in your cortisol dosage is required. The dose of cortisol that you are on is already at the high end of the usual cortisol replacement.

 

GLAUCOMA

What is the relationship between glaucoma and cortisone treatment?

 

Glaucoma is a process in which there is an increased pressure inside of the eye and the chances of this increase with age. Patients who are taking normal amounts of cortisone for replacement therapy, such as patients with Addison's disease should not have an increased incidence of glaucoma although they would have the same incidence as is found in the general population.

 

ILEOSTOMY

My husband has Addison’s and is experiencing bouts of nausea, but he is never sick to his stomach.  He takes cortef: 20 mg in am, 10 mg in pm  (hydrocortisone).  He has also had an ileostomy.

 

I am not quite sure what the problem is.  The dose of hydrocortisone is a little high at 30mg /day, but that would not cause nausea.  You did not say why he had the ileostomy.  He may have had inflammatory bowel disease which is more common in individuals with Addison's disease ,or perhaps it was for some other reason.  My first reaction would be to review the gastrointestinal problem to see what it was, and whether it may not be completely controlled.  There may be other aspects to the problem that might shed more light on the situation.

 

OSTEOPOROSIS

I have read that the hormone parathyroid has an effect on bone density. Is it true that those with evidence of osteoporosis may find that the reason for this may not lie in the fact that they are long-term steroid users as much as the fact that it may be the parathyroid hormone? Is there any validity to this way of thinking?

 

There is validity to the possible role of parathyroid hormone in certain types of osteoporosis. Parathyroid hormone is responsible for maintaining blood calcium levels with a narrow range. In cases of calcium deficiency (low intake) or loss of calcium in the urine, parathyroid hormone draws calcium from bone to maintain blood calcium. With adenomas of the parathyroid there is excess parathyroid hormone secreted and this draws calcium from, bone and excretes it in the urine.  We encourage individuals to take in 1000mg of Calcium in their diet to deposit calcium in bone and keep the parathyroid levels low to avoid calcium removal from bone. Parathyroid adenomas are uncommon and frequently present with kidney stones. They are a possible cause of osteoporosis in rare situations.

 

I have read that there is a new drug soon to be available in the U.S. for osteoporosis. It is called Forteo. I understand it is a synthetic version of the parathyroid hormone and a recent study reported in the NEJ of Medicine cited a study of 1637 postmenopausal women. In this study the bone density had been replenished to the point where treatment could be discontinued. Gains in bone strength occurred in just 3 months of treatment. I understand as well that so far, this is in the form of self-injected daily shots just under the skin but oral and inhaled versions of it are now under study and may soon be available as well.  My thoughts at first are that this is "too good to be true" and like my Daddy always said - it is seems too good to be true, it probably is! However, I would like your thoughts on this new drug or any side effects that were not listed etc. Your help would be greatly appreciated.

 

There are currently studies underway with the subcutaneous injectible form of this hormone and results are promising. Bone remodeling is a relatively slow process

 

OSTOPENIA

I have been taking 10mg hydrocortisone for the last 6 years. Lately I have developed ostopenia and feel it may be because of the hydrocortisone. Could this be possible and if so, can you suggest any herbal replacement.

 

It is always reasonable to ask whether medication that we are taking could be responsible for new problems that come up. I am assuming that you have been diagnosed with adrenal insufficiency and that is why you are taking the hydrocortisone. The adrenal insufficiency can be primary, due to a problem in the adrenal glands, or secondary, due to a problem in the pituitary gland. If the problem is in the adrenal gland, the dose of hydrocortisone (10mg) that you are on, is a relatively low dose and is unlikely to be a factor in your osteopenia. If the problem is in the pituitary, the dose of hydrocortisone is still relatively low and should not cause osteopenia, but there may be other pituitary problems that could contribute to the situation. If you have adrenal insufficiency there are no herbal mediations that you can take that will replace the hydrocortisone. Osteopenia is common in the general population and can be due to multiple factors including diet, activity, age, exposure to the sun (vitamin D) and smoking. The dietary intake of calcium and vitamin D are particularly important. It would be a good idea to review these factors with your family doctor or endocrinologist.

 

PALPITATIONS

I was diagnosed with Addison's in 2007 and have been experiencing palpitations.  I take about 20mg Cortef/daily and take a low dose of Florinef every other day.  I believe my palpitations are related to the low sodium/high potassium problem and low blood volume.  How can I distinguish exactly which is causing it, the low sodium, high potassium or blood  volume?  (I've read that they all can cause palpitations).  What about hypotremia -is that when I drink too much water?

 

I appreciate the Canadian Addison’s Society; I don't know of any support groups north of the border here.  By the way, I have gratefully found 2other Addisonians here at work.  Thanks for your time!

 

Palpitations are not a symptom that is particularly common with Addison's disease unless your blood pressure is low and, even then, you are more likely to be light-headed that have palpitations.  Your medication dose seems appropriate, and I assume that you have had your blood pressure checked and have had blood tests to measure your sodium and potassium.  You should check with your family doctor or endocrinologist to be sure that there are no other factors, such as thyroid problems or anxiety, which could cause palpitations.

 

PANCREATITIS

What is the relationship between Pancreatitis and Addison's disease.

 

Pancreatitis is usually caused by some blockage of the duct draining the pancreas, such as a gallstone or less commonly with increased triglycerides in the blood, which can interfere with the out flow from the pancreas resulting in inflammation. There are other causes of Pancreatitis, but in someone who is not excessively overweight and who is not ingesting excessive amounts of alcohol, these would be the most common causes. Patients with Addison's disease are no more likely to have these problems than the general population.

 

TUBERCULOSIS

If somebody with Addison's disease tests positive for TB with the skin test but the chest x-rays are clear. What does he recommend? Regular x-rays? Treatment with TB antibiotics? Watch for symptoms and follow-up then?

 

The problem of a positive TB skin test in a patient with Addison's disease is interesting. If this patient is an adult; we may assume that the Addison's disease was caused by tuberculosis involving the adrenal glands. This is not necessarily true since someone with Addison's disease can get TB just like anyone else. The fact that this person's chest x-ray is negative suggests that they were exposed to the tubercle bacillus but overcame the infection without developing a chest lesion. Another possibility is that they were immunized with B.C.G., which gives a positive skin test but no infection. If the Addison's disease is due to the TB, they must have had the infection for quite a while. We will often give anti TB drugs to new Addisonian patients when we start cortisone (or prednisone) if they have a chest lesion since the cortisone can allow reactivation of the disease. With a clear chest x-ray I would follow with regular chest x-rays. If someone has had a negative skin test and is positive on a follow up skin test; it suggests recent exposure and advice should be sought regarding a course of treatment.

 

PREGNANCY

I recently found out that I am pregnant! Do I need to make adjustments in my cortisol or Florinef during pregnancy?

 

Generally, no. There may need to be adjustments as the pregnancy progresses. This will depend on any symptoms that develop during the pregnancy. However you will need extra cortisol during the delivery.

 

I have a pregnant patient who has been very symptomatic with low blood pressure (weak, tired feeling, dizzy, unable to work, etc.) Cortisol studies have been normal. Would she benefit from treatment with Florinef? Is there harm in using this?

 

There are several changes in adrenal function occurring during normal pregnancy that make tests difficult to interpret. Measurement of urinary free cortisol during pregnancy usually results in levels which are about twice the normal values. This suggests that cortisol secretion increases during normal pregnancy. Progesterone levels rise dramatically during pregnancy and progesterone has interesting effects on both cortisol and aldosterone. First of all it binds to corticosteriod binding globulin (CBG) and displaces cortisol at the same time that estrogen is increasing CBG, so measurement of cortisol in pregnancy is difficult to interpret. Secondly, progesterone blocks some of the mineralocorticoid effects of aldosterone so during pregnancy, aldosterone production increases dramatically. The usual recommendation is to carry on with the usual doses of glucocorticoid and mineralocorticoid during pregnancy but with the physiological changes going on, it is often necessary to make some adjustments. This is particularly relevant if nausea and gastrointestinal problems complicate the situation. The dose of cortisol can be increased stepwise by 5 or 10 mg. to see if it relieves some of the symptoms. The placenta converts cortisol to inactive cortisone so the foetus is protected and will not be affected by these changes. It sounds as if your patient has not required mineralocorticoid replacement prior to the pregnancy. If she is experiencing hypotension, she would probably benefit from Florinef. Measuring electrolytes in the plasma is usually not helpful because these levels only change when things are more advanced. Most individuals with Addison's disease do well during pregnancy on cortisol and fludrocortisone (Florinef) and I am not aware of any concerns with Florinef during pregnancy.

 

PROSTATE

Recent studies have related higher IGF-1 levels with increased risk of prostate cancer. Is this a concern for men taking 25 mg or 50 mg of DHEA supplementation and is it advisable that IGF-1 levels be monitored? I've read some studies that say there is no relationship between high readings of IGF-1 and prostate cancer, too.

 

The letter from the gentleman in BC raises an interesting question. There is some evidence that an increase in IGF-1 levels above normal is associated with an increase in certain types of concern - specifically, colon cancer. This is seen in acromegaly (a growth hormone secreting pituitary tumor) where IGF-1 levels are above normal. IGF-1 levels are increased by the administration of growth hormone, testosterone and DHEA. The IGF-1 rise with DHEA and testosterone is modest and the levels remain within the normal range. There is no evidence that DHEA or testosterone cause prostate cancer. In men in the post-50 age group, a prostate specific antigen (PSA) level should be measured before starting testosterone or DHEA to be certain they do not have a prostate problem before the DHEA is started.

 

SALT / SODIUM

I've had Addison's for 6 years now and feel very fatigued most of the time. I'm on a diuretic to lower my blood pressure and I'm consuming huge amounts of salt. I've just switched to Himalayan Salt, which is supposed to be natural and not as harmful as normal table salt. I often feel better after consuming the salt. Is something out of whack with my electrolytes? What tests would answer this question?

 

One of the problems with Addison's disease, is that there is a deficiency of Aldostrone, the hormone that regulates sodium (salt) retention by the kidney. When a diuretic is added in the treatment of high blood pressure, there is additional loss of salt, making it difficult to maintain normal sodium levels in the blood. If sodium levels get low, it can lead to an increased desire to eat more salt. This helps compensate to some degree. Salt is sodium chloride, and is from natural sources. In Canada, it is mined and purified and iodine is added. The iodine is added because the soil in most of Canada is iodine deficient because it is remote from the sea. We need the iodine to make thyroid hormone. Sea salt has iodine in it naturally. I am not sure what additional things might be in salt from the Himalayas. The important component is the sodium chloride which would be the same no matter where the salt came from. The way to assess the status of sodium levels is first to check sodium levels in the blood. These are usually normal, unless there is a severe deficiency. The more sensitive assay is the plasma renin. This would be high if there is sodium deficiency. The renin comes from the kidney and is released in response to a lowering of kidney blood flow. This is relatively easy to measure and this can be arranged by your family doctor or endocrinologist. In general, high blood pressure is more readily treated using a calcium channel blocker such as verapamil rather than a diuretic, because it avoids the problems with salt loss.

 

Do we Addisonians need to eat more salt than normal?

 

No - if you are on an appropriate amount of Florinef, a drug with salt retention features, then the salt in a normal diet should be enough.  The exception is on hot summer days when you are sweating and losing fluids, you may wish to increase your salt a bit.

 

I was diagnosed with Addison's about 2 years ago.  I am 53 years of age, on about 20mg of hydrocortisone, 0.10 mg of florinef, and 0.088 mg of synthroid.  As the nerve endings produce enough adrenalin and noradrenalin to look after the blood pressure needs and the flight and fright response, is it still necessary for me to stay on florinef and if so, why?  Many thanks.

 

This is a good question.  There are many factors that are involved in the very complex mechanisms that control blood pressure.  Adrenaline and noradrenaline are one of those mechanisms and they have a specific role for specific situations.  The adrenal normally produces aldosterone which is involved in the control of sodium (salt) in the body, and sodium in the muscle cells in blood vessels is important in the ability of these cells to contract to maintain our blood pressure.  Without adequate sodium in these cells, other factors such as noradrenaline do not have the appropriate effects.  The Florinef that you are taking replaces aldosterone.  It is a very important part of your adrenal replacement.

 

SECONDARY ADDISON’S

In secondary Addison’s, do they replace the ACTH hormone as well as the cortisone therapy?

 

No, the effect of ACTH is to stimulate the adrenal to make cortisol. Since we are replacing the cortisol, there is theoretically no need for ACTH. To replace ACTH, we would have to inject it either many times per day or daily, depending on the preparation. The tablet approach is felt to be more convenient and more effective.

 

I have secondary Addison's and am wondering about the general protocol for having a colonoscopy prep and procedure?  I have heard that people with Addison's may have to spend the night prior to the procedure in the hospital?  I also have a high steroid requirement and am on 43.75 - 50 mg. cortisone acetate split over three times per day and various other meds.  I've never shown signs of Cushings on this dose other than bone loss but am also on Tegretol and low dose synthroid.  I'm also managing a well controlled seizure disorder.  I haven't discussed this with my endocrinologist yet but will soon.  Please give me your opinion on this procedure.

 

Having a colonoscopy is getting to be a fairly common procedure, but that doesn't make it any easier for those going through it.  For some people, the prep is more stressful that the colonoscopy itself.  It depends on the type of prep.  The one involving drinking a large volume of fluid can cause nausea and vomiting and can make it difficult to keep down your cortisone.  You should review this with your gastroenterologist.  He/she may have a protocol to cover this situation.  It depends on the hospital where this is being done.  If the prep is going to be done at home, you should take some extra cortisone when you start, in your case, an extra tablet so you would be taking 75mg that day.  On the day of the procedure, there are 2 options: to be  given 100mg of solucortef intravenously before the procedure; or, to take double your usual dose of cortisone on the morning of the procedure.  It also depends on the time of day it is to be done.  Usually, it is in the morning and you could request this since it would be easier for you.  It would be much less stressful if you were admitted to hospital the day before and you can also discuss this with your gastroenterologist.

 

All of this should first be discussed with your endocrinologist who can coordinate the procedure with the gastroenterologist.  They may have been through this before and have a plan all prepared.  An open discussion always makes everyone feel more comfortable.

 

My friend had an MRI, which has shown a large tumor (2 cm in one area) on the pituitary, indicating secondary Addison's.  Serum prolactin is high.  She has Hashimoto's Thyroiditis.  TSH values have tended to stay suppressed despite adjustments in medication over the past several months.  She feels she is exhibiting symptoms of low thyroid.  Would the THS level be an accurate test given the size and type of tumor?

 

You have raised a very interesting point.  It sounds as if your friend has a prolactin secreting pituitary adenoma which is large enough to crowd out most of the normal cells secreting other pituitary hormones.  This has apparently resulted in secondary adrenal insufficiency as you had suggested.  In this situation, the TSH is no longer helpful in deciding the dose of thyroxine required because TSH secretion is compromised and cannot increase as thyroxine levels fall.  The tests used in this situation are the levels of free T4 and free T3 and also determining how the individual feels.  Other pituitary hormones affecting the ovaries or the testes are commonly affected in this situation so this should be taken into consideration as prolactin levels are brought down with medication.

 

SECONDARY ADRENAL INSUFFICIENCY

My friend has gained 30 lbs in 4 months since diagnosis of Addison's disease.  I attribute some weight to the large amount of cortisol (30 mg then 40 mg) she was initially put on (now taking 22.5 mg).  Low TSH has resulted in the doctor lowering the dose of thyroxin to an all-time low level.  Now with diagnosis of large prolactinoma, she has signs of low thyroid levels.  Could the weight gain also be related to hypothyroidism and associated decreased metabolism?  Secondly, blood pressure has been high and unstable (diastolic) since diagnosis of Addison’s disease.  Previous to diagnosis, blood pressure was easily controlled with low dose Vasotec and Amiloride.  Could the tumour have an impact on blood pressure?

 

I am sorry that your friend is going through such a difficult time.  I hope you are discussing these concerns with her endocrinologist.  If you are not already doing this, you should be going with her when she sees the doctor, and asking these questions directly to her/him.  I am pleased to see that the dose of cortisol is down to 22.5 mg per day.  I have talked about the TSH level in another Q&A, but will just remind you that a TSH is not helpful in determining the dose requirement for thyroxine in individuals with secondary hypothyroidism (pituitary cause).

 

Your friend has secondary adrenal insufficiency and in general these individuals require cortisol but not Florinef because the adrenal is able to make some aldosterone.  This is the usual situation but there are exceptions.  I am not sure whether your friend is on Florinef or not, but this could be reviewed with the endocrinologist.  Since individuals with low cortisol tend to have a low blood pressure, it would not be too unusual for the blood pressure to be a little harder to control once they are treated.  With a 2 cm tumour, it is unlikely that the tumour is responsible for the blood pressure problems.

 

SLEEP

I was diagnosed with Addison's in May 2006.  I am on hydrocortisone, Florinef and also Synthroid as my thyroid stopped functioning as well as the adrenals.  I had ovarian failure almost 20 years ago. Is it normal to wake up in early, around 3:30 - 4am and not be able to fall back to sleep for the rest of the night?  This happens frequently since we returned from a trip to Europe in August.  I have taken melatonin for a few weeks and it helped somewhat (I'm no longer taking it), but I now wake up at 5am feeling anxious and worried.  I take my hydrocortisone early morning (and Synthroid), noon and at supper time.

 

The sleep problem is an interesting one and there may be several factors.  I am assuming that your sleep pattern was satisfactory before your trip to Europe in August.  If that is correct, there would have been a 5hr shift in your body's sleep/wake cycle so that your brain was preparing you to wake up at a new time.  When you came home, your body readjusted and this usually takes about a week, depending on how long you were away.  This should have sorted itself out by now, but may have been a factor in causing the change.  Some individuals on steroid hormones (hydrocortisone, prednisone) have trouble sleeping and this can be helped by the timing of your hydrocortisone medication.  You are taking your medication three times a day and this is ideal.  By moving the lunch and dinner doses a little earlier, say at 11am and 4pm you may find that this will help with your sleep pattern.  You should also review the dose of hydrocortisone because if it is higher than is necessary, this can affect your sleep pattern.

 

I shared your comments with my family doctor (I am in a rural area and so cannot see an endocrinologist on a regular basis) and we did the ACTH test.  The test came back indicating I had no measurable amounts.  What could this mean?  My doctor has been trying to contact my endocrinologist but has been having trouble, so I thought I'd get your opinion. In addition, there have been some other symptoms or lack thereof that have called my Addison's diagnosis into question.  I never got any darkening of skin or scars, although I have read this is usually how Addison's ends up getting diagnosed.  For two years prior to diagnosis, I suffered from chronic low blood sugar, low blood pressure, extreme fatigue and lack of appetite.  I was mistakenly diagnosed with depression and chronic fatigue and put on anti-depressants and Ritalin.  I was sick all the time, and eventually ended up in the ICU due to a throat infection, which we now assume was an Addison's crisis.  An internist tested me and determined I had Addison's.  I was taken off the Ritalin and anti-depressants, and put on a corticosteriod replacement.  My fatigue, blood pressure and blood sugar issues immediately improved.  I was sent to an endocrinologist but he was unable to determine the cause of the disease, i.e. no history or other contributing illnesses.  I am now on a total of 20mg of hydrocortisone a day (10-5-5), reduced from 25 to help combat my blood pressure and weight issues.  Do you think this could be something other than Addison's or do you have any suggestions as to what tests we should do next? 

 

Your tests are interesting and fit with your observation that you did not have increased skin pigmentation at the time of diagnosis.  The skin pigmentation in Addison's disease is due to increased levels of ACTH.  If your cortisol levels were low at the time of diagnosis and your ACTH levels are low, it is possible that you have secondary adrenal insufficiency due to a pituitary problem.  It would be worthwhile asking your family doctor to see if an MRI of your pituitary could be arranged and also check some of your other pituitary hormones - TSH, LH. FSH, and prolactin.

 

SPORTS

My 16-year-old son is a very good hockey player, but was recently diagnosed with Addison’s disease. He is on replacement with cortisol 30mg daily and Florinef 0.1mg daily. What should he do about his medication when he is playing hockey?

 

Playing hockey requires extreme energy and response to stress, and there is loss of salt, water and fluid during the game. Players will need extra cortisol (1/2 to 1 tablet), extra salt and water (eg. Gatorade) and possibly an extra ˝ tablet of Florinef to help retain the salt.

 

THYROID

Can lowering your Prednisone and/or Fludrocortisone affect your thyroid levels?

 

There should not be any effect of changing the dose of these steroids on thyroid levels as long as the doses are in or close to the normal range

 

Should we take over-the-counter medications that state on the box that they should not be taken if the patient has a thyroid problem.

 

A manufacturer is obliged to put this warning on the boxes because most of the drugs for allergies or cold remedies contain some type of adrenalin-like compound. If a patient has hyperthyroidism, the combination of excessive amounts of thyroxine plus the adrenalin-like compounds can cause stimulation of the heart. If a person is taking a normal amount of thyroid hormone, there should be no problem in using any of these medications.

 

TRAVEL

ABROAD

I am 42, and have had Addison's disease since I was 16. In the past, I've been treated for food poisoning and other illnesses with a solu-cortef and saline solution. I am soon going to cross the Atlantic with 5 others aboard a 65' sailboat. Would this venture be too risky if I get seasick and my body cannot absorb the cortef? I plan to take injectible Solu-Cortef with me.

 

A trans-Atlantic trip on a 65' sailboat sounds very exciting. I assume that all of you are experienced sailors and are well prepared for the trip. The fact that you have Addison's disease adds an extra concern, but if you are well prepared you should be able to handle it without too much of a problem. As you know, you should have the Solu-Cortef emergency kits available and each of the members of the crew should be aware of your situation and able to do the injection for you. The Acto-vials come in boxes of 10. I think you should have a box and at least 10 syringes and needles with you. If you should get sick and can't keep your pills down, you will need one and possibly two injections a day depending on the situation. It would also be a good idea to have some drinks along which contain salt, such as Gatoraid.

 

My husband and I have decided to take a trip to France which would involve a 6-hour time difference (later). What should I do about my medication?

 

Maintain the relationship between your medication and the current time of day. So, take your pills before you leave at the usual time and when you reach your destination take your pills at the same time of day as you did at home. Going eastward, this will increase your overall medication levels slightly but put you quickly onto the correct schedule. Coming home you will gain 6 hours, so you may need some extra cortisol. Take an extra ˝ tablet if you feel that you need it.

 

A couple of weeks ago, I was informed I have Addison disease.  The treatment is hydrocortisone (20mg in the morning and 10 mg at night).  I am to travel to Ghana and Nigeria (Africa), and I don't know if it is possible to do this or not, having in mind the medication. 

 

It is certainly possible to travel, even to places such as Ghana, when you have Addison's disease, but you should go over all of the potential problems with your endocrinologist as soon as possible.  It depends on how long you will be away, and whether you will have people travelling with you.  You should also be familiar with the emergency kit, and your travelling companions should know how to use it.  You should discuss your trip in detail with your endocrinologist.  You can also get some travel information and information about the emergency kit from the website http://www.addisonsociety.ca/.

 

ECUADOR

I've had Addison's for about 20 years. I will be going to Quito, Ecuador next month. The elevation is quite high - around 9200 feet. Do I need to be concerned about altitude illness? I do have a tendency to be lightheaded.

 

High altitude should not be any more of a problem for someone with Addison's disease than the general population. With the altitude you will get short of breath more easily with exertion due to the fact that the oxygen pressure is less. This is true for everyone. The weather will be warmer, so you will have to be sure you get enough salt in your diet (you may need to add extra). If you are having episodes of light headedness now, you should get your family doctor to check your plasma renin. This is a test to see if you are getting the right amount of Florinef and enough salt. If this is not correct, you may be more susceptible to more light headedness (due to a fall in blood pressure) in hot weather. Addison's disease should not interfere with your trip.

 

JET LAG

What can an Addison patient do about jet lag when travelling across time zones, e.g. a five-hour difference? The person in question was really ill for five days with flu like symptoms.

 

When crossing time zones, replacement therapy should be quite simply managed: I advise my patients that they should take their normal doses during the day prior to setting out for a flight. If they are taking 20 milligrams of hydrocortisone on waking as their normal replacement dose, I would then suggest that they take 10 milligrams of hydrocortisone each 6 hours until they reach their destination when they should resume their normal pattern on hydrocortisone replacement according to clock time. If they are on less than this dose in the morning, they should take their normal morning dose 6 hourly in the same way. Fluodrocortisone should simply be taken according to clock time.

 

MEXICO

I will be travelling to Mexico shortly. Should I have a letter from my physician to explain at customs why I have to take my medication or is a MedicAlert bracelet sufficient? What should the letter state?

 

When you are travelling it is always a good idea to have a letter from your doctor which states your diagnosis and the medications that you are on. The pills should be in the bottles that you got from the pharmacy so that they are clearly labeled. When travelling to a place where it may not be easy to get to a doctor, it is a good idea to carry an emergency kit containing solu-cortef and a syringe and needle for injection. This should be clearly labeled. If you are not familiar with the emergency kit, you can get a description from the web site and take it to your doctor.

 

YELLOW FEVER VACCINATION

We required Yellow Fever vaccination for a cruise stop in Columbia, and the doctor would not give me one. I gather that they will not be given to anyone who takes over 10mg of corticosteroids a day. The vaccine is live and complications could result if given. We were told that a waiver would be needed for each trip taken. Is this correct?

 

This person has raised an interesting question regarding yellow fever vaccination in individuals with Addison's disease. She has stated that her doctor would not give the vaccine to anyone taking over 10mg of corticosteroids per day. I am assuming that this means 10mg of prednisone per day. This would be equivalent to 40mg of cortisol or 50mg of cortisone per day, and this is a slightly higher dose than is normally used for replacement in individuals with adrenal insufficiency. Levels of corticosteroids that are higher than physiological (normal) can suppress the immune system, and can either decrease the antibody response to the vaccine so that the individual will not be protected or can increase the possibility of a reaction to the vaccination. For a full discussion regarding yellow fever vaccination, you can review the Centre for Disease Control web site at Centre for Disease Control.The vaccine is apparently administered at specific approved sites where the physician should have the correct information.

 

WEIGHT GAIN

I was diagnosed with Addison’s about a year ago and have noticed a considerable weight gain after my initial crisis in hospital. I was taking prednisone until recently, changing to hydrocortisone and florinef about 2 weeks ago. This change has made a big difference and I feel a lot better, but will still need to settle on a dose that will keep me stable throughout my day. However, my weight gain seems to continue to creep up and my face looks rather puffy. I try to exercise regularly and keep an eye on my diet. If you have any suggestions or comments, I would appreciate it.

 

The question relates to the dose of glucocorticoid (prednisone or hydrocortisone) replacement. Weight gain and a puffy face are usually symptoms of too much prednisone or hydrocortisone. The dose of hydrocortisone required may vary from 20 to 40mg per day. It should be spread throughout the day. e.g. 20mg hydrocortisone first thing in the morning, 5mg at lunch and 5mg in the afternoon, or 10mg in the morning, 5mg at lunch and 5mg in the afternoon. The lowest dose that keeps you feeling well is the best for you.

 

I was diagnosed with Addison's in 1995. At that time, my weight was 158lbs., now I'm at 236lbs. I have also been diagnosed with osteoarthritis and find it very difficult to walk. I have joined an aquasize class, but it makes me so tired. Should I be taking extra medication before class and is it normal for my skin to be really dry?

 

Individuals with Addison's disease do not necessarily gain excess weight when they are on an appropriate dose of cortisol. You did not say what dose of glucocorticoid you are on, but it should be reviewed with your endocrinologist. If you are gaining weight it could be a combination of a) too much glucocorticoid (cortisol, prednisone), b) too many calories and c) not enough activity. I would not suggest that you take extra medication before a normal exercise workout; your normal dose should be enough. Dry skin is not generally a symptom of Addison's disease, and may be a non specific problem. It can be a symptom of an under active thyroid which occurs in about half of the patients with Addison's disease, so this would be worth checking.

 

My 16yr old daughter was diagnosed with Addison's disease in January after having an Addisonian crisis. She lost a lot of weight at that time but has since gained it back, plus more. Is her body falsely telling her to eat, or is it a side affect of the Cortef, Florinef and Synthroid (for her hypothyroidism)?

 

When treatment was started, your daughter would have felt better and regained the weight she lost as she was getting ill. Her weight should level out if the dose of cortisol is appropriate. The commonest cause of excessive weight is being on too much glucocorticoid replacement (cortisone, cortisol, prednisone). The lowest dose that makes her feel well is the right dose. This can be as low as 15mg of cortisol a day. The florinef and thyroid are unlikely to be a significant factor in excessive weight gain.

 

Can I expect weight gain with this disease? I was diagnosed 3 months ago and I am on 15mg of cortef a day and feel pretty good. It has not happened yet, but can I expect it down the road?

 

Addison's disease is due to a deficiency of adrenal steroid hormones. The treatment is replacement of these missing hormones with hydrocortisone (Cortef) and a mineralocorticoid (Fludrocortisone). If the dose of cortef is appropriate, there should not be a sufficient weight gain. Some people gain weight after being treated because they have lost weight prior to being diagnosed, or because their appetite has improved after being treated. If there is any excessive gain in weight it is most likely due to being on too much hormone. The dose of cortef mentioned is 15mg daily and this is a dose unlikely to cause weight gain.

 

I have just come off of a high dosage of Prednisone as I suffer from minimal change (Nephrotic Syndrome). I have gained 2st.. As I am off the steroids, will the weight come back down again?

 

I am making two assumptions in answering your question. First, that you do not have Adrenal insufficiency in addition to your Nephrotic Syndrome and second, that 2st means 2 stone which is equal to 28lbs. If you have been able to get off the Prednisone completely, then your weight should return to normal with time. How long it will take to get back to your pretreatment level depends on how long you were on the Prednisone. In general, things do return to normal.

 

Why do some people with adrenal insufficiency have weight problems when they are treated with cortisone, while others seem not to have the same difficulty?

 

The cortisone replacement is designed to return your hormone levels to normal. It is very important that the amount of cortisone replacement is not excessive or it can lead to some weight difficulties. In the past, we have tended to use cortisone or prednisone doses which may be a little more than are actually needed. In general, patients can get along with either 25 or 37.5 mgs, of cortisone daily or 5 or 7.5 mgs. of prednisone. It’s important to balance this with fludrocortisone. We tend to look at ACTH levels and renin levels as a guide to the dose of each of these medications. Once the cortisone and florinef replacement has been appropriately balanced, then activities as well as food intake are both important in maintaining appropriate weight.

 

Question arose regarding weight problems, and raised  the question as to whether or not the thyroid is important in this area. This questioner also asks about the role of DDAVP.

 

Since the primary cause of adrenal insufficiency is autoimmune and the primary cause of hypothyroidism is also autoimmune a large proportion of patients with adrenal insufficiency are also on thyroid replacement. The amount of thyroid is titrated to obtain normal levels of TSH and once this has been achieved the patient is generally normal from a thyroid standpoint. In general, if their cortisone, fludrocortisone and thyroxine are at optimum levels, they should be able to maintain their weight as in a normal situation. DDAVP is a hormone that acts on the kidney to control water output and really does not play a role in weight gain or weight loss under normal circumstances.

 

I am struggling, trying to keep my weight down as I am also diabetic and just starting on insulin. I keep gaining weight. I am on Cortef. What can I do?

 

I'm assuming you are on Cortef because you have Addison's disease. If you are gaining weight, there are a variety of possibilities. 1. You are on more cortisol than you need, 2. You are not as active as you should be, 3. You are taking in too many calories. The easiest of these possibilities is the dose requirement for cortisol is variable from one person to another usually between 15 and 30mg per day. The lowest dose that keeps you feeling well is the best for you. Too much cortisol will also make your blood sugar more difficult to control so it is worthwhile taking a careful look at it.

 

FOR NON ADDISON PATIENTS

I am not sure if I have Addison's or if I am heading in that direction. I have had two cortisol saliva tests and both came back below normal limits on 6am and 12 midnight levels. I feel like I have a bad hangover most of the time and moderate depression (I am a non drinker) but start to feel better after 6pm every day. If not early stages of Addison's then what else could this be? I have tried many herbal remedies and glandulars which worked for a short time then stop working after a few days. My doctor put me on very low dose cortef but I felt worse after taking it.

 

The symptoms you have described are quite non specific and could be associated with a variety of problems. None of the labs in this area measure salivary cortisol so I am not sure how accurate the values are that you have had. If they are done well, they are very good. The most satisfactory way to diagnose adrenal insufficiency is to measure cortisol and ACTH levels. In Addison's disease, the problem is in the adrenal gland and ACTH levels will be high in attempting to make the adrenal work harder. If the problem is in the pituitary gland, both cortisol and ACTH will be low. If you are taking cortisol, the tests will be difficult or impossible to interpret. You should discuss the situation with an endocrinologist who can assess both your symptoms and your physical examination and help to suggest futher lab work or suggest other possible causes for your symptoms.

 

Does Addison's disease hit all at once, or does it come on slowly? I've had off and on "symptoms" for 4 years, unexplained weight loss, diarrhea, sometimes uncontrollable body tremors/shakes and chills with body temp drops sometimes almost down to 96F, often some degree of weakness and lethargy, no libido and little energy. Doctors have said I'm "depressed" or that it's just IBS, but, after also starting to occasionally get severe stabbing pains in my upper back that last long enough to make me lose my breath and scream, I'm starting to wonder. I have no odd skin discolouration, but does that necessarily come with the disease? I know it's rare, and I did know someone who unfortunately died from complications very shortly after her diagnosis. I've been very worried lately - should I be?

 

Addison's disease usually comes on gradually over several years. Once the adrenal damage reaches a critical stage, individuals can become ill quite quickly. Weight loss is a common symptom, but diarrhea, chills and back pain are not usually associated with Addison's disease. Skin pigmentation is a common feature but may not be obvious in some situations. If there is a family history of Addison's disease or other autoimmune diseases such as thyroid disease or diabetes, or if you are worried about this problem, you should talk to your family doctor. The best test to rule out the diagnosis is a serum ACTH. The ACTH goes up as the adrenal is starting to fail because of damage by antibodies and is elevated when serum cortisol and other tests are normal.

 

I am a 48 year old female, with minimal ACTH, low TSH, low IGF 1 reading, and also low cortisol. I am taking 5mg prednisone and .1mg synthroid. I have nasty hot flashes and no libido, and have been on Andriol for one month, with no change. I use progesterone cream for 20 days/month. My last period was 60 days ago. An MRI discovered two small 2mm growths on my pituitary, my doctor said these were not significant. I feel awful, fatigued, dizzy, painful moving around and body aches (fibromyalgia). My night and day are completely reversed. I also have celiac disease; antibody test ANA was negative. What else can I be doing to fix my health? I really need to get back to work.

 

Because you are on prednisone and thyroxine, you must have been diagnosed sometime in the past with underactivity of your adrenal and thyroid glands. You are also having hot flashes suggesting that your ovarian function is underactive either due to a normal menopause (age 48) or less likely, an early menopause as part of an autoimmune process involving the ovaries, thyroid and adrenals. The celiac disease could also be part of this autoimmune process. The ACTH and TSH levels depend on when they were taken. If they were taken before starting prednisone and thyroxine, it would suggest a pituitary problem. If they were taken while on medication, it may be the normal response to the medication. Small nonfunctioning adenomas can be seen on MRI of the pituitary and may be of no significance, but it is important to know the clinical situation in which they are found to rule out a functioning adenoma. The situation that is presented is a complex one that requires a detailed discussion with an endocrinologist to explain what is known in this case and what additional investigation may be needed to resolve any unexplained findings. It would be important to talk to your family doctor to arrange such an appointment if you do not already have an endocrinologist.

 

A question was asked about the use of a scan called MP59 or NP59 to detect adrenal tissue that may have been missed during surgery.

 

I have not heard of these particular code words and it would depend on what type of equipment is being used. The most common scan used to detect adrenal tissue that has escaped surgery is an iodocholesterol scan. This has radioactive cholesterol, which is taken up by tissues that are using cholesterol to make cortisone and this can be detected provided the area of uptake is large enough. If you can find some more information about MP59 or NP59, I would be more than happy to try to check it out for you.

 

Is congenital adrenal hypoplasia (CAH) the same as Addison’s Disease?

 

CAH is an uncommon problem in the development of the adrenal due to an abnormality on the X chromosome. It presents either at birth or shortly after with salt loss and failure to thrive.

 

After several years of being treated for Addison’s Disease, one of the CAS members was told by a specialist that it may be Simmonds’ Disease. What is that?

 

Simmonds disease is secondary adrenal insufficiency. This means that the adrenal problem is due to a lack of ACTH from the pituitary rather than a problem in the adrenal gland itself.