And It's About Time There Was Some Support For Cushing's!
Health Alert: Adrenal Crisis Causes Death in Some People Who Were Treated With hGH
Recently, doctors conducting the follow-up study of individuals treated with hGH looked at causes of death among recipients and found some disturbing news. Many more people have died from a treatable condition called adrenal crisis than from CJD. This risk does not affect every recipient. It can affect those who lack other hormones in addition to growth hormone. Please read on to find out if this risk applies to you. Death from adrenal crisis can be prevented.
Adrenal crisis is a serious condition that can cause death in people who lack the pituitary hormone ACTH. ACTH is responsible for regulating the adrenal gland. Often, people are unaware that they lack this hormone and therefore do not know about their risk of adrenal crisis.
Most people who were treated with hGH did not make enough of their own growth hormone. Some of them lacked growth hormone because they had birth defects, tumors or other diseases that cause the pituitary gland to malfunction or shut down. People with those problems frequently lack other key hormones made by the pituitary gland, such as ACTH, which directs the adrenal gland to make cortisol, a hormone necessary for life. Having too little cortisol can be fatal if not properly treated.
Treatment with hGH does not cause adrenal crisis, but because a number of people lacking growth hormone also lack ACTH, adrenal crisis has occurred in some people who were treated with hGH. In earlier updates we have talked about how adrenal crisis can be prevented, but people continue to die from adrenal crisis, which is brought on by lack of cortisol. These deaths can be prevented. Please talk to your doctor about whether you are at risk for adrenal crisis.
When someone with adrenal gland problems has weakness, nausea, or vomiting, that person needs immediate emergency treatment to prevent adrenal crisis and possible death.
• Why are adrenal hormones so important? Cortisol (or its replacement) helps the body respond to stress from infection, injury, or surgery. The normal adrenal gland responds to serious illness by making up to 10 times more cortisol than it usually makes. It automatically makes as much as the body needs. If you are taking a cortisol replacement drug because your body cannot make these hormones, you must increase the cortisol replacement drugs during times of illness, injury, or surgery. Some people make enough cortisol for times when they feel well, but not enough to meet greater needs when they are ill or injured. Those people might not need cortisol replacement every day but may need to take cortisol replacement medication when their body is under stress. Adrenal crisis is extremely serious and can cause death if not treated promptly. Discuss this problem with your doctor to help decide whether you need more medication or other treatment to protect your health.
• How is adrenal crisis treated? People with adrenal crisis need immediate treatment. Any delay can cause death. When people with adrenal crisis are vomiting or unconscious and cannot take medicine, the hormones can be given as an injection. Getting an injection of adrenal hormones can save your life if you are in adrenal crisis. If you lack the ability to make cortisol naturally, you should carry a medical ID card and wear a Medic-Alert bracelet to tell emergency workers that you lack adrenal hormones and need treatment. This precaution can save your life if you are sick or injured.
• How can I prevent adrenal crisis?
• If you are always tired, feel weak, and have lost weight, ask your doctor if you might have a shortage of adrenal hormones.
• If you take hydrocortisone, prednisone, or dexamethasone, learn how to increase the dose when you become ill.
• If you are very ill, especially if you are vomiting and cannot take pills, seek emergency medical care immediately. Make sure you have a hydrocortisone injection with you at all times, and make sure that you and those around you (in case you're not conscious) know how and when to administer the injection.
• Carry a medical ID card and wear a bracelet telling emergency workers that you have adrenal insufficiency and need cortisol. This way, they can treat you right away if you are injured.
Remember: Some people who lacked growth hormone may also lack cortisol, a hormone necessary for life. Lack of cortisol can cause adrenal crisis, a preventable condition that can cause death if treated improperly .
Deaths from adrenal crisis can be prevented if patients and their families recognize the condition and are careful to treat it right away.
Adrenal crisis is a medical emergency. Know the symptoms and how to adjust your medication when you are ill. Taking these precautions can save your life.
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National Endocrine and Metabolic Diseases Information Service
The National Endocrine and Metabolic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services.
The NIDDK conducts and supports biomedical research. As a public service the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.
Publications produced by the NIDDK are carefully reviewed by both NIDDK scientists and outside experts.
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DebMV suggested that you should have a Medic Alert bracelet from medicalert.org
number in the USA is: by phone 7 days a week, 24 hours a day: 888-633-4298
209-668-3333 from outside the U.S.
Lorrie got this important info for us.
adrenal crisis; Addisonian crisis; acute adrenal insufficiency
An abrupt, life-threatening state caused by insufficient cortisol, a hormone produced and released by the adrenal gland.
The two adrenal glands are located on top of the kidneys. They consist of the outer portion, called the cortex, and the inner portion, called the medulla. The cortex produces three types of hormones, which are called corticosteroids. The androgens and estrogens affect sexual development and reproduction. The glucocorticoids maintain glucose regulation, suppress the immune response, and provide for the response to stress (cortisol). The mineralocorticoids regulate sodium and potassium balance. These hormones are essential for life.
Acute adrenal crisis is an emergency caused by decreased cortisol. The crisis may occur in a person with Addison's disease, or as the first sign of adrenal insufficiency. More uncommonly, it may be caused by a pituitary gland disorder. It may also be caused by sudden withdrawal of corticosteroids, removal or injury of the adrenal glands, or destruction of the pituitary gland. Risk factors are stress, trauma, surgery, or infection in a person with Addison's disease, or injury or trauma to the adrenal glands or the pituitary gland. The incidence is 4 out of 100,000 people.
People who have Addison's disease should be taught to recognize signs of potential stress that may precipitate an acute adrenal crisis (cause it to occur suddenly and unexpectedly). Most people with Addison's disease are taught to give themselves an emergency injection of hydrocortisone in times of stress. It is important for the individual with Addison's disease to always carry a medical identification card that states the type of medication and the proper dose needed in case of an emergency. Never omit medication. If unable to retain medication due to vomiting, notify the health care provider.
In adrenal crisis, an intravenous or intramuscular injection of hydrocortisone (an injectable corticosteroid) must be given immediately. Supportive treatment of low blood pressure is usually necessary. Hospitalization is required for adequate treatment and monitoring. Low blood pressure may be treated with intravenous fluids. If infection is the cause of the crisis, antibiotic therapy is indicated.
Death may occur due to overwhelming shock if early treatment is not provided.
For more personal experiences, see the message boards
Shauna Wrote...What adrenal crisis feels like
As with most mornings, this one began with nausea. I'm used to it, so didn't think much about it. I made it to the bathroom and was feeling really awful. Decided to just go to the toilet because I had that impending feeling.
Next thing I knew I was waking up, but it wasn't like a normal awakening. I remember being in a tunnel and then thinking, "Well, this isn't where I normally sleep." Then I realized of course it wasn't where I normally slept! Normally I sleep in a bed, not wedged between a wall and the toilet. (Not that I was that coherent).
I was completely disoriented as to time, place, etc. I had one big yell in me and yelled "HELP". My four year old brought me the phone and my son got me a towel. I called 911 (thank God I had a 911 sticker on the phone because I really couldn't remember the number). I kept telling the dispatcher I was in adrenal crisis. Of course, that meant nothing to him. I had my son get my shot but somewhere I knew that I wasn't together enough to give myself the shot. So I puked a few more times and told my son to take my daughter upstairs so she wasn't scared when the ambulance came.
I decided to rest on the floor of the bathroom. I had, at first, tried to go to the couch but I was much, much too weak. So my son directed the medics into the bathroom. They eventually carried me to the couch. I kept telling them about my shot, but couldn't remember where I had my letter from Dr. Cook. They thought I was an overdose or a psych case (they told me later). They had all my pills lined up and were asking when I took this or that one last. I finally told them to look at the friggin date on the bottle and see that they were all 3/4 full. (I was agitated, too)
They put the heart monitor on me and inserted an IV and took me to the hospital. I puked one more time in the ambulance and when we arrived (though my tummy was empty). My brother and sister-in-law where there (hospital) when I arrived and my mom had arrived at my house to take care of the kids as we were leaving. Then she met us up there.
Before we arrived at the hospital, my husband had faxed a copy of Dr. Cook's letter on how to treat me over (Brian was at work when this happened). So they came in and inserted another fluid bag. Then about ten minutes later (after my brother told the doctor, "I fully expect that my sister will have her shot withing the next ten minutes" - patient advocates are a good thing because I could've cared less at that point) I had my 100 mg shot of solu-medrol. I was lucky because my doctor in the ER knew about adrenal crisis.
Then I had another bag and repeated tests of my bp and heartrate. It wasn't pretty - every time my bp was low, generally around 80/50, sometimes lower and my heart rate was 120+. They decided to admit me, but I fought and fought. Once I got a shot of Zofran (anti-nausea, best in the world) and my cortisone and some fluid, I was feeling decent. I look and feel like I've been through a war, but I'm alive.
As to why this happened, we're not entirely sure at this point. I have one urine test that they're culturing or something. I might also have shingles, but again - that'll show up in due time (a day or two, if I have it). Or, as Dr. Cook said when I talked to him, sometimes we just don't know. I was doing so well on my meds, back up to 27.5 and feeling good. Now I'm on 40 for the next day, and 30 for a week. Frustrating.
Adrenal crisis is awful. It's terrifying. And what makes me want to cry as I write this (who am I kidding, I am crying) is that I couldn't have cared less if I lived or died. I was not in my right mind, I felt so horrid. All the surgeries combined, today was the worst day I've ever had. And it was a huge wake-up call. I need to have a better medic-alert bracelet because they had no idea what "Stress dose steroids" were. I need to have a list of what to do in crisis on my fridge, in my purse and with every family member. Same with the letter from my endo on how to treat me. Because when I'm in crisis, I don't know any better. I need to have things that speak for me. Thank God for family that knows, and for good doctors.
Anyway, I didn't post this to scare anyone but Adrenal Crisis is not something to take lightly. When I felt myself hurting the night before (back pain, possibly shingles though I doubt it) I should've just taken an extra 5 mgs. Would've been a heck of a lot easier than what happened today.
A few funny parts of the day: My daughter had to dress herself and my mom was in a hurry to get her to daycare and come see me. So my daughter spent the day at daycare in tights, too small shorts and a turtleneck (none of which came close to matching). Oh, and black patent leather shoes.
Also, the medics asked what I weighed. Out of habit, I said 222 (my highest Cushing's weight). They ALL did a double take and said no way. One guessed 140 - bless his heart. I never did get myself weighed so I don't even know.
Oh, and if any of you called at about 8 am and spoke with a medic, call me back. lol I had a blocked call at 8am, and I vaguely remember the medic talking to someone but I wasn't with it enough to ask who called. lol
Something I don't say enough: I love and value you all.
Sue sent this along:
The following is from the June 2002 issue of Addison News. Joan Hoffman, editor/publisher, kindly sent this issue to me and I wanted to share this with you.
This is a flow chart to show the pathway of events in a crisis. It is very important to intervene as early as possible. Use your injectible and head for the hospital! The rate at which these events take varies with individuals and circumstances. The chart is a variation of one found in a nursing encyclopedia.
Double-click to see the chart full-sized. It will open a new window