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Hello! I'm new here, and I have autoimmune Addison's Disease. I was dx almost 5 years ago, this coming June. Does anyone else here have it? I currently take Cortef, 15mg 2x day, and Florinef, .1mg 1x day. I also have autoimmune Hypothyroid, and take take Synthroid, but I can't recall the dosage at the moment. Technically I guess I have Schmitts Syndrome, but I never say that. I have a 3mm Pituitary tumor, also. Fun.
Even though I take the medication, the AD still affects me on a daily basis and I am always nauseous, light headed, dizzy, etc. I have a hard time keeping a job b/c I'm always getting sick. I really want to be a nurse, but just working at a Children's Hopsital as a Nursing Assistant I got sick ALL the time.
Lately I've been getting these weird spells where I get suddenly very nauseous and feel like I'm going to pass out...so fast, like a slap in the face. As long as I put my head lower than the rest of my body and wait it out, it goes away in 2-5 minutes. It sucks horribly while it is happening, though. This just started a month or two ago. I'll have one per day for a couple weeks, then not have any for a while, then they'll start again. Luckily I have only had one out of the house, at Applebee's while out to lunch with my husband. That one took longer to go away b/c I couldn't exactly put my butt up in the air and my head on the floor. LMAO
I don't know anyone else in non computer life that has AD. My sister in law's sister has it, but I've only met her once. She was in town when my niece was baptized, but my son had Influenza B that weekend, and my husband was the Godfather, so I had to stay home with him. I don't really have anyone to commiserate with.
The constant steroids for the past 5 years have caused Osteoporosis in my hips and spine. That sucks. I'm not surprised though. My grandmother had it, and we are both petite and thin. At the moment my Endocrinologist has decided not to do anything beyond extra calcium.
My Rheumatologist also thinks that I have pre-Rheumatoid Arthritis. I have most of the symptoms...bilateral joint pain and swelling in my shoulders, wrists, fingers, hips, knees, and ankles. According to xrays and MRIs she has ruled out Bursitis (which she initially thought) and has decided that it is not Fibromyalgia b/c of my symptoms. As for my symptoms, I have the joint pain and swelling, obviously, I have Sjogren's with dry eyes and mouth, I get mouth sores, joint pain is worse at awakening in the am and after prolonged sitting (I can't sit or stand still for very long periods without being in excruciating pain), and I get what seems like the remission and flairs. I'm currently in a "flair" right now, and my shoulders, hands, and hips have been killing me for about 2-3 weeks now. Surprisingly, my knees and ankles haven't been bothering me this time. Usually my knees are the worst, but my shoulders are this time. Besides a positive ANA 1:640, I don't currently have any blood indicators of RA, but that doesn't mean they won't come. RA runs in my family, the same grandmother with Osteoporosis had RA. She also had Lupus, which is what they initially thought I had, but I'm pretty sure they ruled that out for now.
Click on my blinkies!!
**thank you SO much to tasha_mae for my beautiful siggy
and to CupcakeJamie and Niamh ૐ for my blinkies!!**
Last edited by somo_chickenlady; March 13th, 2009 at 03:09 AM.
No I don't, but I understand what it's like to have constant chronic fatigue and several other of the symptoms that go along with it.
I can imagine it's very hard! How do you get thru it each day to day? Have your meds changed in the past year and have they helped?
I'm going to post some information for those looking to see if there's anyone else and to read more about it.
Addison's disease — Comprehensive overview covers symptoms, treatment of this disorder of the adrenal glands.
Addison's disease is a disorder that results when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol, and often insufficient levels of aldosterone as well.
Also called adrenal insufficiency or hypocortisolism, Addison's disease can occur at any age, but is most common in people ages 30 to 50. Addison's disease can be life-threatening.
Treatment for Addison's disease involves your taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce.
Addison's disease symptoms usually develop slowly, often over several months, and may include:
Muscle weakness and fatigue
Weight loss and decreased appetite
Darkening of your skin (hyperpigmentation)
Low blood pressure, even fainting
Low blood sugar (hypoglycemia)
Nausea, diarrhea or vomiting
Muscle or joint pains
Acute adrenal failure (addisonian crisis)
Sometimes, however, the signs and symptoms of Addison's disease may appear suddenly. In acute adrenal failure (addisonian crisis), the signs and symptoms may also include:
Pain in your lower back, abdomen or legs
Severe vomiting and diarrhea, leading to dehydration
Low blood pressure
Loss of consciousness
High potassium (hyperkalemia)
Your adrenal glands, located above each of your kidneys, produce a number of hormones, among them cortisol, aldosterone and testosterone.
Adrenal glandsYour adrenal glands are located just above each of your two kidneys. These glands are part of your endocrine system, and they produce hormones that give instructions to virtually every organ and tissue in your body.
Your adrenal glands are composed of two sections. The interior (medulla) produces adrenaline-like hormones. The outer layer (cortex) produces a group of hormones called corticosteroids, which include glucocorticoids, mineralocorticoids and male sex hormones (androgens).
Some of the hormones the cortex produces are essential for life — the glucocorticoids and the mineralocorticoids.
Glucocorticoids. These hormones, which include cortisol, influence your body's ability to convert food fuels into energy, play a role in your immune system's inflammatory response and help your body respond to stress.
Mineralocorticoids. These hormones, which include aldosterone, maintain your body's balance of sodium and potassium and water to keep your blood pressure normal.
Primary adrenal insufficiency
Addison's disease occurs when the cortex is damaged and doesn't produce its hormones in adequate quantities. Doctors refer to the condition involving damage to the adrenal glands as primary adrenal insufficiency.
The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.
Other causes of adrenal gland failure may include:
Other infections of the adrenal glands
Spread of cancer to the adrenal glands
Bleeding into the adrenal glands
Secondary adrenal insufficiency
Adrenal insufficiency can also occur if your pituitary gland is diseased. The pituitary gland makes a hormone called adrenocorticotropic hormone (ACTH), which stimulates the adrenal cortex to produce its hormones. Inadequate production of ACTH can lead to insufficient production of hormones normally produced by your adrenal glands, even though your adrenal glands aren't damaged. Doctors call this condition secondary adrenal insufficiency.
Another more common possible cause of secondary adrenal insufficiency occurs when people who take corticosteroids for treatment of chronic conditions, such as asthma or arthritis, abruptly stop taking the corticosteroids.
If you have untreated Addison's disease, an addisonian crisis may be provoked by physical stress, such as an injury, infection or illness.
When to seek medical advice
See your doctor if you have signs and symptoms that commonly occur in people with Addison's disease. Most people with this condition experience darkening areas of skin (hyperpigmentation), severe fatigue, unintentional weight loss, and gastrointestinal problems, such as nausea, vomiting and abdominal pain. Dizziness or fainting, salt cravings, and muscle or joint pains also are common.
Your doctor can determine whether Addison's disease or some other medical condition may be causing these problems.
Tests and diagnosis
Your doctor will talk to you first about your medical history and your signs and symptoms. If your doctor thinks that you may have Addison's disease, you may undergo some of the following tests:
Blood test. Measuring your blood levels of sodium, potassium, cortisol and ACTH gives your doctor an initial indication of whether adrenal insufficiency may be causing your signs and symptoms. A blood test can also measure antibodies associated with autoimmune Addison's disease.
ACTH stimulation test. This test involves measuring the level of cortisol in your blood before and after an injection of synthetic ACTH. ACTH signals your adrenal glands to produce cortisol. If your adrenal glands are damaged, the ACTH stimulation test shows that your output of cortisol in response to synthetic ACTH is blunted or nonexistent.
Insulin-induced hypoglycemia test. Occasionally, doctors suggest this test if pituitary disease is a possible cause of adrenal insufficiency (secondary adrenal insufficiency). The test involves checking your blood sugar (blood glucose) and cortisol levels at various intervals after an injection of insulin. In healthy people, glucose levels fall and cortisol levels increase.
Imaging tests. Your doctor may have you undergo a computerized tomography (CT) scan of your abdomen to check the size of your adrenal glands and look for other abnormalities that may give insight to the cause of the adrenal insufficiency. Your doctor may also suggest a CT scan or MRI scan of your pituitary gland if testing indicates you have secondary adrenal insufficiency.
Treatments and drugs
If you receive an early diagnosis of Addison's disease, treatment may involve taking prescription corticosteroids. Because your body isn't producing sufficient steroid hormones, your doctor may have you take one or more hormones to replace the deficiency. Cortisol is replaced using hydrocortisone (Cortef), prednisone or cortisone acetate. Fludrocortisone (Florinef) replaces aldosterone, which controls your body's sodium and potassium needs and keeps your blood pressure normal.
You take these hormones orally in daily doses that mimic the amount your body normally would make, thereby minimizing side effects. If you're facing a stressful situation, such as an operation, an infection or a minor illness, your doctor will suggest a temporary increase in your dosage. If you're ill with vomiting and can't retain oral medications, you may need corticosteroid injections.
In addition, your doctor may recommend treating androgen deficiency with an androgen replacement called dehydroepiandrosterone. Some studies indicate that, for women with Addison's disease, androgen replacement therapy may improve overall sense of well-being, libido and sexual satisfaction.
An addisonian crisis is a life-threatening situation that results in low blood pressure, low blood levels of sugar and high blood levels of potassium. This situation requires immediate medical care. Treatment typically includes intravenous injections of:
Coping and support
These steps may help you cope better with a medical emergency if you have Addison's disease:
Carry a medical alert card and bracelet at all times. In the event you're incapacitated, emergency medical personnel know what kind of care you need.
Keep extra medication handy. Because missing even one day of therapy may be dangerous, it's a good idea to keep a small supply of medication at work, at a vacation home and in your travel bag, in the event you forget to take your pills. Also, have your doctor prescribe a needle, syringe and injectable form of corticosteroids to have with you in case of an emergency.
Stay in contact with your doctor. Keep an ongoing relationship with your doctor to make sure that the doses or replacement hormones are adequate but not excessive. If you're having persistent problems with your medications, you may need adjustments in the doses or timing of the medications.
Adrenal fatigue: What causes it?
Salt craving: A symptom of Addison's disease?