National Adrenal Diseases Foundation

P.O. Box 566

Lake Zurich, IL 60047
(847) 726-9010
[email protected] www.nadf.us

CALCIUM AND BONE HEALTH HAND-OUT

From: NADF News®, VOL. XIX, No. 4 • 2007

Q&A
By Paul Margulies, M.D., FACE, FACP

Q. I have a question about supplemental vitamins. I have been told that because I have celiac and
Addison’s, I should be taking many supplemental vitamins. I see a nutritionist and belong to a sup-
port group for celiac and I get a lot of mixed messages. The biggest problem I have is that it seems
no one, even my doctors, know that much about Addison’s. It has been a year since I was diagnosed
with Addison’s and a year and a half with celiac disease. I work a stressful job and feel that I need to
retire or find another job, as I have many times when my sodium level has been low. I now know
when to recognize this so that I do not have to be hospitalized each time. Any help you can give me
would be appreciated. Thank you.

A. There is no specific vitamin regimen necessary for Addison’s disease. However, I usually suggest
a general multivitamin/mineral supplement to a good healthy diet. Extra calcium is very important,
especially for post-menopausal women. The celiac disease tends to cause a malabsorption of vita-
min D. I suggest that anyone with celiac disease have a serum 25-OH vitamin D level checked. If it
is low, adding extra vitamin D is essential. Doses of 800 to 1200 U per day are useful for normal to
slightly low D levels. If the blood test shows very low levels (below 20), then prescription strength
vitamin D should be given and monitored by your doctor.

From: NADF News®, VOL. XXII, No. 3 • 2007

LIVING THE LIFE OF AN

ATYPICAL ADDISONIAN
by Jan Judge

It was very refreshing to read in the last NADF newsletter about how well some of our members are
doing. It is incredible to believe what Dusty is undertaking! No matter what, she is a winner! I was an
advocate of exercise and played various sports prior to acquiring Addison’s disease. I have the sec-
ondary type due to developing severe adult onset asthma and being given high doses of steroids
over a long period of time. This has drastically changed my life. I can no longer play sports and have
gained over 100 pounds from the steroids. I have had many complications from the steroids, some
of which include: having to have both hips replaced; osteoporosis; multiple stress fractures; steroid-
induced cataracts; and myopathies and neuropathies, to name a few. I also easily go into crisis and
am often on increased doses of Prednisone to stop the oncoming crash. I remain thankful that we
have the technology and medications available to treat most of these side effects as well as the
Addison’s Disease itself. I am sure that, as with any other disease, people have varying degrees of
severity and different complications. For example, there are four of us in my support group who have
underlying conditions and complications associated with Addison’s that have drastically affected our
lives. For most of us, sports have sadly become things of the past. I am genuinely happy for all of
you who are doing well and living the lifestyle you want. It is good that the disease does not keep
you down or dominate your life. I just wanted to make you aware that there is unfortunately another
side of the coin. Some of us have had to put our sport shoes away, and continue to deal with limiting
complications on a daily basis.

From: NADF News®, VOL. XXII, No. 2 • 2007

Q&A
By Paul Margulies, M.D., FACE, FACP

Q. I have read calcium supplements are not needed by males, but with this condition is it a good
idea to take them (and vitamin D)? If so, what is the recommended dosage, assuming a normal diet
with one glass of milk/day?

A. For men I suggest a good multivitamin that contains some calcium (usually 200-300 mg) and vita-
min D (usually 400 units). If he must be on higher than usual steroid doses, this should be increased
to vitamin D 800 to 1200 units plus extra calcium such as Caltrate 600, one to two per day. These
doses would also be needed by anyone found to have osteoporosis, where other medication to build
bone (such as Fosamax, Actonel or Boniva) would be prescribed in addition to the calcium and vita-
min D

RARE DISEASE FORCES YOUNG WOMAN TO FIND OWN ANSWERS

By Paula Evans Neuman – The New Herald
(reprinted using the Fair Use Act)

There is a saying in the medical profession that says, “When you hear hooves, look for horses, not
zebras.” Well, in my case, there were definitely stripes,” said Dayna Chlebek, 24, of Lincoln Park.

The saying means, of course, that doctors should seek the most common causes of symptoms
before they look for rarities. A practical approach that surely works best most of the time. But for
Chlebek, it was a rarity. Cushing’s disease, that was the cause of her symptoms. And nearly three
years of misdiagnoses made it even worse for her.

The young woman found she had to overcome her frustration, muster her courage and advocate for
herself to get the treatment she desperately needed. “I had to fight for myself,” Chlebek said. “And
being a 23-year-old girl telling doctors who’ve been practicing for decades that they are wrong was
not easy.”

Her symptoms began showing up about three years ago, when she started to gain weight and
become increasingly irritable. She tried to eat healthier and exercise more. But her weight and the
mood swings continued to increase, so she sought medical help. Her doctor diagnosed her with an
under-active thyroid gland, and put her on medication, to no avail. Chlebek continued to gain weight
and began to suffer from anxiety, so an appetite suppressant and an antidepressant were pre-
scribed.

“Weeks went by with no improvement, and I started noticing other strange symptoms,” Chlebek said.
She developed acne on her normally clear skin and was unable to sleep for days on end.

“When I slipped one day in my back yard and was immediately covered in black bruises, I knew
something was seriously wrong,’ Chlebek said. She went back to the doctor. “He took my blood pres-
sure and it was through the roof,” Chlebek said. She was prescribed blood pressure medication,
blood was drawn for tests, and she was asked to come back for a follow-up. By the next appoint-
ment, my feet had swelled to the size of cinder blocks,” Chlebek said.

More blood work. Another prescription, this time for a diuretic. The blood work results indicated hor-
monal problems, and Chlebek was told to stop taking birth control pills. “This only caused my symp-
toms to get worse,” she said. “I gained another 15 pounds. I was beginning to see purple markings
that looked like thick vines all over my abdomen and thighs, and my blood pressure kept getting
worse and worse.”

She grew increasingly frustrated with the medical profession’s seeming inability to help her. So
Chlebek, who is an accountant and a graduate student at Wayne State University, started doing her
own research. She spent frantic hours searching the Internet for a cause of her symptoms. “I came
across a Web site called Cushings-help.com, which had a long list of symptoms, of which I have
about 90 percent,” she said. She begged to be tested for the rare disorder, and a few more tests
were done. But before the results came back, her condition worsened dramatically. One night, her
blood pressure skyrocketed, and her boyfriend rushed her into the emergency room, fearing she’d
have a stroke. She was admitted and spent six days in the hospital having test after test, again to no
avail. Once she was released, she sought out a new endocrinologist on her own.

The new doctor reviewed her previous test results.“You have Cushing’s,” he told her, circling the high
levels for ACTH (adrenocorticotropic hormone), a hormone released by the pituitary gland located
just below the brain, on her blood test results.

Too much ACTH stimulates the adrenal glands (located just above the kidneys) to release an excess
of cortisol, another hormone. Cortisol normally helps the body respond to stress in various ways,
including regulating blood sugar, metabolism and blood pressure. A tumor of the pituitary gland caus-
es Cushing’s disease, which leads to excessive levels of cortisol being produced over a long period
of time. “The amount of cortisol running through my body was the cause of all of my symptoms, and
would cause many more in the next few months,” Chlebek said. She was referred to a neurosur-
geon, a Cushing’s specialist, at the University of Michigan Medical Center in Ann Arbor. But her HMO
refused to pay for her treatment there. She petitioned her insurance company and waited, while her
symptoms worsened. Her menstrual cycles ceased and she suffered hot flashes, as well as high
anxiety, loss of concentration and terrible mood swings and depression. Eventually, Chlebek found a
recently arrived neurosurgeon at Henry Ford Hospital in Detroit, where her insurance was valid.
More tests were done seeking a pituitary tumor that was causing her problems. The tests were
inconclusive, but the gland was slightly enlarged on one side, so the surgeon went up through her
nasal cavity and removed the left side of Chlebek’s pituitary. No tumor was found. After six days in
the hospital, she was released, despondent and seriously ill. “Over the next three months, I confined
myself to my home,” Chlebek said. “My symptoms were worsening.” She suffered from “excruciating
back pain,” which she attributed then to her abdominal weight gain. She later learned, however, that
the pain was from a fractured vertebrae due to the beginning stages of osteoporosis — another mal-
ady caused by Cushing’s disease. Her endocrinologist believed a tiny benign tumor was still there in
her pituitary, but removing the whole gland would prevent her from ever having children. He suggest-
ed removal of her adrenal glands — a dramatic step that the surgeons she saw were reluctant to
take.

So more tests were done, again to no avail. “I felt ruined, ugly and extremely depressed,” she said.
Chlebek had to go “doctor shopping” once again, and at last found a laparoscopic surgeon at anoth-
er hospital who was willing to perform a bilateral adrenalectomy.

She had the operation March 7, after nearly three years of seeking answers and effective treatment.
Chlebek will have to take replacement hormones for the rest of her life, and medication for the dia-
betes insipidus that developed as a result of her disease and treatment. It’s unknown at this point if
she’ll ever be able to become pregnant. But in the four months since the surgery, she’s been able to
return to work and school. Her anxiety is fading and she’s lost 25 pounds.

Chlebek knows a full recovery will take time, and she is active with support groups to help others
with her rare disorder get proper treatment. “My best advice is to know your own body and be your
own advocate,” she said. “I’m bound and determined to get back to living a normal life and someday,
hopefully, have a family to tell my story to.”

From: NADF News®, VOL. XX, No. 3 • 2005

Excerpt from: Brittle Bones Can Affect

Older Men As Well
Fractures less common but more lethal for men
than for women, experts say.
By E.J. Mundell
HealthDay Reporter
(Reprinted using the Freedom of Information Act.)

Then there's diet and exercise.

“In general, men over the age of 50 should be getting 1,200 mg of calcium a day from diet, or diet
and supplements combined,” Weber said. Lane advises men to use calcium citrate — not bicarbon-
ate — supplements, because the bicarbonate formulation raises risks for kidney stones.

The current recommended daily allowance for another bone-strengthener, vitamin D, is 400
International Units (IU) per day for older men, but Weber said that level is currently under review and
will no doubt be revised.

“I think maybe upwards of 800 to 1,000 IU can be safely recommended for men,” he said. Many
foods, including milk, come fortified with vitamin D (check the label) and cod liver oil capsules are
particularly high in the nutrient.

Skin also manufactures vitamin D under strong sunlight. “It has to do with the sun's angle, though,
so go out there between 10 a.m. and 2 p.m. rather than taking a walk in the early morning,” Weber
said.
from: NADF News®, VOL. XX, No. 2 • 2005

CALCIUM AND VITAMIN D FOR STRONG BONES

by Melanie Wong

To maintain healthy bones, people must get adequate calcium, Vitamin D and physical activity,
especially women over 50.

Is it possible that this is even more important for people with adrenal insufficiency? (The jury is still
out on this one.)

While reading the first paragraph in this article, how many of you remember reading Vitamin D? Do
you just remember calcium? Many people don’t know about the importance of Vitamin D for good
bone health.

Vitamin D is necessary because it helps the body absorb calcium from ingested food. It allows calci-
um to leave the intestines and enter the bloodstream. Vitamin D also works in the kidneys to help
absorb calcium that might otherwise be excreted.

It is very difficult, almost impossible, to get the required amount of Vitamin D from ingested food. It is
found only in a limited number of foods, such as certain cereals, various dairy products, oysters and
fatty fish such as sardines and salmon. Milk has long been fortified with Vitamin D. Now fortified
orange juice can be added to the short list.

Of course, Vitamin D is manufactured in the human body after sun exposure, but heat from the sun
might be something Addisonians don’t necessarily enjoy or tolerate well.

A suppliment might be needed for people to achieve an adequate amount of Vitamin D in their diet.
Note: Too much Vitamin D is dangerous; talk to your doctor.

Sources:

Vitamin D Necessary for Healthy Bones

Jennifer Wider, M.D.
Society for Women’s Health Research
March 31, 2005

sunlightD.org website
Krispin Sullivan, CN

Medline Plus
Vitamin D webpage

NADF does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have med-
ical knowledge. In all cases, NADF recommends that you consult your own physician regarding any course of
treatment or medication.