Health Alert: Adrenal Crisis Causes Death in Some People Who Were Treated With hGH

[cat lady]

I attempted to find a date on this alert, but was not able to locate one.

 

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.

 

Why should people treated with hGH know about adrenal crisis? Among the people who received hGH, those who had birth defects, tumors, and other diseases affecting the brain lacked hGH and often, other hormones made by the pituitary gland. A shortage of the hormones that regulate the adrenal glands can cause many health problems. It can also lead to death from adrenal crisis. This tragedy can be prevented.

What are adrenal hormones? The pituitary gland makes many hormones, including growth hormone and ACTH, a hormone which signals the adrenal glands to make cortisol, a hormone needed for life. If the adrenal gland doesn't make enough cortisol, replacement medications must be taken. The most common medicines used for cortisol replacement are:

Hydrocortisone

Prednisone

Dexamethasone

What is adrenal crisis? Adrenal hormones are needed for life. The system that pumps blood through the body cannot work during times of physical stress, such as illness or injury, if there is a severe lack of cortisol (or its replacement). People who lack cortisol must take their cortisol replacement medication on a regular basis, and when they are sick or injured, they must take extra cortisol replacement to prevent adrenal crisis. When there is not enough cortisol, adrenal crisis can occur and may rapidly lead to death.

 

 

What are the symptoms of lack of adrenal hormones? If you don't have enough cortisol or its replacement, you may have some of these problems:

feeling weak

feeling tired all the time

feeling sick to your stomach

vomiting

no appetite

weight loss

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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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.

 

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[monicaroni]

I would think that the people they are referring to died not because they were taking hGH, but because they had other problems (panhypopit, post-op pituitary, etc.) that caused them to go into adrenal crisis, and the ER docs treating them either did not recognize it or did not take them seriously. But on the plus side, maybe the alert will wake some of these idiot docs up.

[da89165]

I think the combination has been called out because HGH expedites the removal of cortisol replacement medicine. They're not sure if it has the same effect on the cortisol your body makes, but it certainly does with the cortisol medicine.

 

I can tell a difference since I started taking my GH medicine in the am. I've had to add 2.5mg of cortef to my daily routine.

 

Anything that draws attention to an adrenal crisis is one step further in educating docs and patients!!!

[cat lady]

I would think that the people they are referring to died not because they were taking hGH, but because they had other problems (panhypopit, post-op pituitary, etc.) that caused them to go into adrenal crisis, and the ER docs treating them either did not recognize it or did not take them seriously. But on the plus side, maybe the alert will wake some of these idiot docs up.

 

Exactly, which is why I thought posting it here important since so many end up needing hGH after pit surgery and BLAs.

 

Now the hard part...having the docs in the real world respond accordingly when needed.

[justashell]

My fear is that instead of correcting the problem---recognizing the need for increased cortisol---some dumb doctors will attempt to "fix"

the problem by trying to discontinue the GH.

 

I also agree that maybe this will alert doctors to something that needs attention: learning to treat "rare"patients correctly.

 

I'm not sure that the local ER would know what to do with me if something like this happened. The closest REAL hospital is 330 miles away.

(This is my humble opinion based on the attitude and action I've received in times past).

[rasato]

I agree this is a real problem. I started GH in June of this year and in August I had to start cortisol replacement. I to live in a very rural area where Dr's won't recognize this and know how to treat it. So I wrote up "instructions" on what to do if I am having "xxxx" symptoms. I am going to be taking this to my endo in Feb to get his approval. It lists things like my medical history and what meds I am on and what the symptoms of adrenal crisis is and how to treat it down to the specific meds to use and the dosages for me. Once approved from my Endo I will be putting this on file at the local emergency room as well as having it posted on my fridge with my File of Life info and in my purse. This might seams kind of over the top in prevention but I figure it can't hurt. I have also talked specifically with my local first responders so they know what is going on with me.

 

Sara

[cat lady]

I agree this is a real problem. I started GH in June of this year and in August I had to start cortisol replacement. I to live in a very rural area where Dr's won't recognize this and know how to treat it. So I wrote up "instructions" on what to do if I am having "xxxx" symptoms. I am going to be taking this to my endo in Feb to get his approval. It lists things like my medical history and what meds I am on and what the symptoms of adrenal crisis is and how to treat it down to the specific meds to use and the dosages for me. Once approved from my Endo I will be putting this on file at the local emergency room as well as having it posted on my fridge with my File of Life info and in my purse. This might seams kind of over the top in prevention but I figure it can't hurt. I have also talked specifically with my local first responders so they know what is going on with me.

 

Sara

 

I don't think that's over the top at all. I think you were incredibly proactive and smart to make sure emergency protocol is easy to find and available to all who might need it.