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MEDICAL
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SECONDARY
ADRENAL INSUFFICIENCY
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
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
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
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
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
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
So far my family doctor is the only one treating my
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
I have had
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
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!
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.
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 1½ 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.
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
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.
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
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.
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.
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.
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
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.
Can you please tell me where in
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.
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
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.
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
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,
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
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
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
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.
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.
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., ½ 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.
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.
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.
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
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
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.
My
There
is no problem combining hormone replacement therapy (in this case estrogen
alone) with medication for Addison's disease or thyroid medication.
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.
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.
Is surgery out of the question for a person with
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
There has been much discussion about blood donation
and organ donation of Addisonians from different parts of the world. Can we as
Addisonians in
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
The doctor who treated me for
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.
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.
I have had
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.
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.
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
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
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
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.
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
How accurate is the salivary testing for steroids and
is it available in
Measurement
of salivary steroids has been used with some success, particularly by a group
in
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.
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.
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),
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.
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
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
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.
What is the value of taking Pregnenolone? How does it
compare to DHEA? Apparently it is not a restricted drug in
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.
My 21 year old daughter and was diagnosed with
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.
My father was diagnosed with
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
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.
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.
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
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.
I was diagnosed with
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.
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.
My husband has
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.
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
There
are currently studies underway with the subcutaneous injectible form of this
hormone and results are promising. Bone remodeling is a relatively slow process
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.
I was diagnosed with
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.
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.
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.
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.
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.
I've had
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
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
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.
In secondary
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
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
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.
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.
I was diagnosed with
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
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
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.
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 ½ tablet
of Florinef to help retain the salt.
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.
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
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
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 ½ tablet if you feel that you
need it.
A
couple of weeks ago, I was informed I have
It
is certainly possible to travel, even to places such as
I've had
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.
What can an
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.
I will be travelling to
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.
We required Yellow Fever vaccination for a cruise stop
in
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.
I was diagnosed with
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
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.
I am not sure if I have
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.