Year: 2025

💉 Helpful Doctors: Arizona

MaryO Five Star , ,

Donna’s Doctor. She said on the message boards

“I Went to my Endo appt yesterday (prepared) I had a list of all of my symptoms and a few photos of me to show the dramatic changes that my body has gone through over a short period of time. Without my prompting, He is sure that I have Cushings. …The endo walked in the room, introduced himself, took a good look at me and my pictures and asked me if I had ever heard of Cushings? He told me that I was in good hands and that he would set me up with a great neurosurgeon.”

Dr. Alexander Zwart. He is located in Tucson Arizona.

Tucson Endocrine Associates.

5910 N La Cholla Blvd.

Tucson Arizona, 85741.

(520) 297-0404

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Helpful Doctors: Dr. Fernandez-Miranda

MaryO Helpful Doctors , , , , , , , ,

This month the spotlight focuses on Dr. Juan Carlos Fernandez-Miranda, a Professor of Neurosurgery and the Surgical Director of Brain Tumor, Skull Base and Pituitary Centers at Stanford University. Dr. Fernandez-Miranda did a neurosurgery residency at La Paz University Hospital in Madrid, Spain. He completed a fellowship in microsurgical neuroanatomy at the University of Florida. He did clinical training in cerebrovascular surgery at the University of Virginia, and in endoscopic endonasal and open skull base surgery at University of Pittsburgh Medical Center (UPMC). He joined the faculty at Stanford earlier this year. He was kind enough to answer some questions from the PNA. His answers are below:

What inspired you to choose your career path?

When I was a young kid, about 10-11 years old, I got sick with a skin rash and high fever; the family doctor visited our home, carefully examined me, and based on a number of clues, he determined I got a very rare bacterial infection known as scarlet fever; a few days of antibiotic medication and I was back to normal. I now realized that I was fascinated by the wisdom, expertise, and detective attitude of the physician, and this personal event was (I now know) key to my future decision to become a doctor.

As I started medical school, I became deeply interested in the structure of the brain and how it explains brain and perhaps even mind function. I realized that the closest I could get to know the brain was actually as a surgeon operating on it.

I became a neurosurgery resident, and I immediately felt that entering into a patient’s brain, skull base, or pituitary gland was a huge privilege and a unique experience that will require my entire devotion and attention. I learned from my mentors the importance of precise knowledge of surgical neuroanatomy to perform gentle, accurate, and safe surgery. After residency training, I decided to spend 2 entire years in the lab – fully dedicated to mastering the understanding of the complex tridimensional surgical neuroanatomy required to safely and efficiently navigate the brain and skull base. These years, under the guidance of legendary neurosurgeon Albert Rhoton, served as the basis of everything I have accomplished thus far.

I was then fortunate to continue my clinical training at University of Virginia with several giants of neurosurgery, and I was greatly influenced by the meticulous approach of Dr. Ed Oldfield’s pituitary surgeries, particularly for Cushing’s disease. It was such a joy to watch his precise extracapsular tumor resections. At the same time, I had become totally enchanted by the endoscopic endonasal operations that Dr. Amin Kassam was performing at University of Pittsburgh, and after many requests he finally accepted me for specialized training with him and his team. That was a life changing event for me, as my career was about to be centered in the development and refinement of endoscopic endonasal skull base and pituitary surgery.

What is the primary focus of your work/research?

My primary clinical focus is the treatment of patients with pituitary, skull base, and brain tumors. I have particular technical expertise in endoscopic endonasal surgery for pituitary tumors and other skull base lesions, such as craniopharyngiomas, meningiomas, and chordomas, with an accumulated surgical experience of more than 1,000 cases. My clinical practice includes a full range of minimally invasive approaches, in addition to complex open skull base and brain surgery.

My research interests lie in the study of surgical neuroanatomy and the application of innovative techniques into the operating room that aim to improve surgical safety and effectiveness. As an example, along with my fellows, we have recently provided a new compartmental classification of the cavernous sinus that may help improve resection rates of pituitary tumors that invade the cavernous sinus, while preserving cranial nerve function. We have also described the structure of the medial wall of the cavernous sinus and the ligaments that anchor it to the carotid artery, and we have implemented an innovative surgical technique to selectively remove the medial wall of the cavernous sinus; this is extraordinarily important to achieve complete remission in certain functional tumors causing Cushing’s disease or acromegaly, and our results have proven not only the efficacy of this novel technique, but its safety when appropriately performed.

What do you consider to be the future of your field?

There is no doubt that the field is already moving towards multidisciplinary super-specialization, promoting the creation of Pituitary Centers of Excellence that provide dedicated clinical care, research, and education. This favorable trend will facilitate the development of more effective surgical and medical treatments. Pituitary tumors should only be treated by fellowship-trained neurosurgeons in this field at high-volume surgical centers.

In spite of the multiple advances in the treatment of pituitary tumors, we are still in need of further improvement at all levels. From the surgical point of view, the future is on developing better visualization tools and mini-robotic instruments that will allow more effective and less invasive operations. From the imaging point of view, I believe functional imaging, such as PET-MRI, may improve the diagnosis and localization of hormonally active microadenomas with “negative” MRI studies. The future will hopefully bring newer and more effective medical therapies for active and even inactive pituitary tumors.

What should patients know about your field/what deserves more recognition/awareness?

I think the most important message for current and future patients is to make sure they seek the best team around to treat their disease. It is important to emphasize the team approach, because experience, knowledge, and collaboration is critical to obtaining the best outcome. This extends to all members of the team, including not only the neurosurgeon and the endocrinologist, but also ENT, neuro-ophthalmologist, radiation therapist, neuroradiologist, and neuropathologist.

What would you like to convey about yourself to your patients?

I strive to offer my patients the best possible treatment, that combines ultimate surgical and technological applications with compassionate care. I believe in teamwork and I am privileged to work with such a stellar team at Stanford. I have dedicated my life to becoming the best possible surgeon for my patients.

Why did you get involved with the PNA and what is the extent of your involvement?

I have always been fascinated by the diagnosis and treatment of pituitary tumors and pituitary diseases, and I feel extremely fortunate to dedicate a large portion of my practice to helping pituitary patients. My motivations perfectly align with the PNA goals, and this is the main reason I got involved. I have contributed to the education and counseling of patients through the PNA and I hope to continue to do so for the years to come.

Adapted from https://pituitary.org/highlights-enewsletter-child/spotlight-dr-fernandez-miranda/

💉 Helpful Doctors: Pennsylvania

MaryO Four Star, Helpful Doctors , ,

 

Dr. Julia Kharlip
Hospital of University of Pennsylvania
Spruce St
Philadelphia, PA

Endocrinologist specializing in Cushing’s

 

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👥 Interview: False Positives for Adrenal Insufficiency

MaryO Interviews, Meetings and Conferences , , , , , ,

– AI false positives pose serious danger to patients; cutoff changes recommended

by Scott Harris , Contributing Writer, MedPage Today November 15, 2021

This Reading Room is a collaboration between MedPage TodayÂŽ and:

Medpage Today

For adrenal insufficiency (AI), reducing false positives means more than reducing resource utilization. Treatments like glucocorticoid replacement therapy can cause serious harm in people who do not actually have AI.

Research published in the Journal of the Endocrine Society makes multiple findings that report authors say could help bring down false positive rates for AI. This retrospective study ultimately analyzed 6,531 medical records from the Imperial College Healthcare NHS Trust in the United Kingdom.

Sirazum Choudhury, MBBS, an endocrinologist-researcher with the trust, served as a co-author of the report. He discussed the study with MedPage Today. The exchange has been edited for length and clarity.

This study ultimately addressed two related but distinct questions. What was the first?

Choudhury: Initially the path we were following had to do with when cortisol levels are tested.

Cortisol levels follow a diurnal pattern; levels are highest in the morning and then decline to almost nothing overnight. This means we ought to be measuring the level in the morning. But there are logistical issues to doing so. In many hospitals, we end up taking measurements of cortisol in the afternoon. That creates a dilemma, because if it comes back low, there’s an issue as to what we ought to do with the result.

Here at Imperial, we call out results of <100 nmol/L among those taken in the afternoon. Patients and doctors then have to deal with these abnormal results, when in fact they may not actually be abnormal. We may be investigating individuals who should really not be investigated.

So the first aim of our study was to try and ascertain whether we could bring that down to a lower level and in doing so stop erroneously capturing people who are actually fine.

What was the second aim of the study?

Choudhury: As we went through tens of thousands of data sets, we realized we could answer more than that one simple question. So the next part of the study became: if an individual is identified as suspicious for AI, what’s the best way to prove this diagnosis?

We do this with different tests like short Synacthen Tests (SST), all with different cutoff points. Obviously, we want to get the testing right, because if you falsely label a person as having AI, the upshot is that treatments will interfere with their cortisol access and they will not do well. Simply put, we would be shortening their life.

So, our second goal was to look at all the SSTs we’ve done at the center and track them to see whether we could do better with the benchmarks.

What did you find?

Choudhury: When you look at the data, you see that you can bring those benchmarks down and potentially create a more accurate test.

First, we can be quite sure that a patient who is tested in the afternoon and whose cortisol level is >234 does not have AI. If their level is <53.5 then further investigation is needed

There were similar findings for SSTs, which in our case were processed using a platform made by Abbott. For this platform, we concluded that the existing cut-offs should be dropped down to 367 at 30 minutes or 419 at about 60 minutes.

Did anything surprise you about the study or its findings?

Choudhury: If you look at the literature, the number of individuals who fail at 30 minutes but pass at 60 minutes is around 5%. But I was very surprised to see that our number at Imperial was about 20%.

This is a key issue because, as I mentioned, if individuals are wrongly labelled adrenally insufficient, you’re shortening their life. It’s scary to think about the number of people who might have been given steroids and treated for AI when they didn’t have the condition.

What do you see as the next steps?

Choudhury: I see centers unifying their cutoffs for SST results and making sure we’re all consistent in the way we treat these results.

From a research perspective, on the testing we’re obviously talking about one specific platform with Abbott, so research needs to be done on SST analyzers from other manufacturers to work out what their specific cutoffs should be.

Read the study here and expert commentary on the clinical implications here.

The study authors did not disclose any relevant relationship with industry.

💉 Helpful Doctors: California

MaryO Five Star, Helpful Doctors, North Carolina , , , , , , , ,

Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.

Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.

He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

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❓Can You Help?

MaryO Can You Help? , , , , , , ,

I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.

I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.

I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, either :(

Anyone?

Please respond here or on the message boards.

Thanks!

😎 Letter to Cushies

MaryO Golden Oldie , , , ,

Originally posted on Facebook​​​​​​​ November 14, 2017:

To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better.  I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it.

After a year and a half  since my BLA and I am the healthiest, happiest person I have been in a very long time.  I am working out with a personal trainer once a week because I am determined to regain the strength I lost due to having Cushing’s for six very long years.   I have a long way to go and it is not going to happen overnight but it will happen.

I live each day to the absolute fullest and enjoy every minute of every day, I am so grateful to have made it through to the other side, not without some emotional and physical scars, but I made it none the less.

I think about and pray for all of you every day because without your knowledge and support I don’t know that I would have made it.

To those of you who are still on the boards please feel free to share this post and my story to everyone there.  I am sorry I don’t go on the boards any more, but as I said I didn’t make through without some emotional scars.

I love you all, god bless and be good to yourself always.

ℹ️ Basics: Pituitary Tumors and Headaches

MaryO Basic Info , ,

Headaches are a common complaint in patients with pituitary tumors. Although many patients presumably have headaches which are unrelated to their pituitary tumor, there are several important direct and indirect mechanisms by which pituitary tumors may elicit or exacerbate headaches. Pituitary tumors may directly provoke headaches by eroding laterally into the cavernous sinus, which contains the first and second divisions of the trigeminal nerve, by involvement of the dural lining of the sella or diaphragma sella (which are innervated by the trigeminal nerve), or via sinusitis, particularly after transsphenoidal surgery. Headache pain in these situations is typically characterized by steady, bifrontal or unilateral frontal aching (ipsilateral to tumor). In some instances, pain is localized in the midface (either because of involvement of the second division of the trigeminal or secondary to sinusitis).

In contrast to the insidious, subacute development of headaches in most patients with pituitary tumors, patients with pituitary apoplexy may experience acute, severe headaches, perhaps associated with signs and symptoms of meningeal irritation (stiff neck, photophobia), CSF pleocytosis or occulomotor paresis. Routine CT scans of the head occasionally skip the sella, hence the presence of blood or a mass within the sella may not be detected and patients can be misdiagnosed with meningitis or aneurysm. Because pituitary apoplexy represents a neurosurgical emergency, MRI should be used in patients with symptoms suggestive of this disorder. A subacute form of pituitary apoplexy has also been reported. Patients with subacute pituitary apoplexy experience severe and/or frequent headaches over weeks to months and have heme products within the sella on MRI scans.

In most instances, headaches are not attributable to direct effects of the pituitary tumor and indirect causes must be considered. Generally, indirect effects of pituitary tumors are caused by reduced secretion of pituitary hormones and are manifested by promotion of “vascular” headaches (e.g., migraine). The major exception to this rule relates to the potential for acromegalic patients to develop headaches secondary to cervical osteoarthritis. Vascular headaches may be exacerbated in association with disruption of normal menstrual cyclicity and impaired gonadal steroid secretion (e.g., from hyperprolactinemia or gonadotropin deficiency). Hyperprolactinemia, hypothyroidism and hyperthyroidism may also have direct effects, independent of gonadal hormones. Headaches are common in acromegaly, and in the majority of cases the etiology is not well understood.

Finally, drug management of pituitary tumors may inadvertently impact headaches. Octreotide results in extremely rapid headache improvement with patients with acromegaly. The rapid time course suggests it is not due to lowering of GH levels. Octreotide also has a dramatic beneficial effect on migraine and may be producing relief of headache by vascular mechanisms. Occasionally severe headaches surface in acromegalic patients after reduction or discontinuation of octreotide, as a “withdrawal” phenomenon.|

Bromocriptine or other dopamine agonists occasionally trigger severe headaches. When this occurs, it is important to recognize that bromocriptine has been reported as a cause of pituitary apoplexy, and it may be necessary to perform an MRI or CT to rule out infarction or hemorrhage within the pituitary. Once it is established that the patient is not infarcting the pituitary, it is generally safe to treat the headaches symptomatically (not with an ASA containing drug) and consider alternative therapies for the prolactinoma if the problem remains severe.

Pituitary tumor patients with vascular headaches are generally quite responsive to standard prophylactic migraine drugs (e.g., tricyclic antidepressants, verapamil and beta-blockers). It is best to begin therapy with very low-dose medication (e.g., 10 mg of amitriptyline at bedtime) and resist the impulse to escalate the dose rapidly to higher levels. Often patients have an excellent response to 10-30 mg of a tricyclic antidepressant, although it may take up to six or more weeks to reach the ultimate benefit. The choice of tricyclic antidepressant should be based upon the desired side effects (e.g., either more sedation or less sedation) The newer, serotonin-selective antidepressants are generally less effective for headaches than tricyclics, although some patients do respond nicely to these agents. In some cases it may be necessary to use combination therapy (e.g., verapamil plus a tricyclic).

From https://www.massgeneral.org/neurosurgery/treatments-and-services/pituitary-tumors-and-headaches?fbclid=IwAR2iBMjf5VNvw2_ucalXikyIZIh3dJuYu0Kk6P1jhQ2IDnDj9ubkPO4Zl9A

ℹ️ Basics 911! Adrenal Crisis, Addison’s/Adrenal Insufficiency

MaryO Basic Info , ,

Cushing’s Help Podcast: Adrenal Crisis

Be sure to print this page to carry with you.

Definition:
Acute adrenal crisis is a life-threatening state caused by insufficient levels of cortisol, which is a hormone produced and released by the adrenal gland.

Alternative Names: Adrenal crisis; Addisonian crisis; Acute adrenal insufficiency

Causes, incidence, and risk factors:
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, all of which are called corticosteroids.

Cortisol is a glucocortoid, a corticosteroid that maintains glucose (blood sugar) regulation, suppresses the immune response, and is released as part of the body’s response to stress. Cortisol production is regulated by a small gland just below the brain called the pituitary gland. Cortisol is essential for life. Acute adrenal crisis is a medical emergency caused by a lack of cortisol. Patients may experience lightheadedness or dizziness, weakness, sweating, abdominal pain, nausea and vomiting, or even loss of consciousness.

Adrenal crisis occurs if the adrenal gland is deteriorating (Addison’s disease, primary adrenal insufficiency), if there is pituitary gland injury (secondary adrenal insufficiency), or if adrenal insufficiency is not adequately treated. Risk factors for adrenal crisis include physical stress such as infection, dehydration, trauma, or surgery, adrenal gland or pituitary gland injury, and ending treatment with steroids such as prednisone or hydrocortisone too early.

Symptoms:

  • Headache
  • Profound weakness
  • Fatigue
  • Slow, sluggish movement
  • Nausea
  • Vomiting
  • Low blood pressure
  • Dehydration
  • High fever
  • Shaking chills
  • Confusion or coma
  • Darkening of the skin
  • Rapid heart rate
  • Joint pain
  • Abdominal pain
  • Unintentional weight loss
  • Rapid respiratory rate (see tachypnea)
  • Unusual and excessive sweating on face and/or palms
  • Skin rash or lesions may be present
  • Flank pain
  • Loss of appetite

Signs and tests:

  • An ACTH (cortrosyn) stimulation test shows low cortisol.
  • The baseline cortisol level is low.
  • Fasting blood sugar may be low.
  • Serum potassium is elevated ( usually primary adrenal insufficiency).
  • Serum sodium is decreased (usually primary adrenal insufficiency).

Treatment:
In adrenal crisis, an intravenous or intramuscular injection of hydrocortisone (an injectable corticosteroid) must be given immediately. Supportive treatment of low blood pressure with intravenous fluids is usually necessary. Hospitalization is required for adequate treatment and monitoring. If infection is the cause of the crisis, antibiotic therapy may be needed.

Expectations (prognosis):
Death may occur due to overwhelming shock if early treatment is not provided.

Complications:

  • shock
  • coma
  • seizures

Calling your health care provider:
Call your health care provider if you have Addison’s disease and are unable to retain usual medications because of vomiting.Go to the emergency room or call the local emergency number (such as 911) if symptoms of acute adrenal crisis develop.

Prevention:
People who have Addison’s disease should be taught to recognize signs of potential stress that may cause an acute adrenal crisis. Most people with Addison’s disease are taught to give themselves an emergency injection of hydrocortisone or increase their dose of oral prednisone 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.

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.

 

 

DebMV suggested that you should have a Medic Alert bracelet from medicalert.org

Toll free 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.

Alternative names:

adrenal crisis; Addisonian crisis; acute adrenal insufficiency

Definition:

An abrupt, life-threatening state caused by insufficient cortisol, a hormone produced and released by the adrenal gland.

Causes, incidence, and risk factors:

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.

Prevention:

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.

Symptoms:

  • headache
  • profound weakness
  • fatigue
  • slow, sluggish, lethargic movement
  • nausea
  • vomiting
  • low blood pressure
  • dehydration
  • high fever
  • chills shaking
  • confusion or coma
  • darkening of the skin
  • rapid heart rate
  • joint pain
  • abdominal pain
  • unintentional weight loss
  • rapid respiratory rate
  • unusual and excessive sweating on face and/or palms
  • skin rash or lesion may be present
  • flank pain
  • appetite, loss

Signs and tests:

  • An ACTH (cortrosyn) stimulation test shows low cortisol.
  • The cortisol level is low.
  • The fasting blood sugar may be low.
  • The serum potassium is elevated.
  • The serum sodium is decreased.
  • This disease may also alter the results of the following tests:
    • sodium, urine
    • 17-hydroxycorticosteroids

Treatment:

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.

Expectations (prognosis):

Death may occur due to overwhelming shock if early treatment is not provided.

Complications:

  • shock
  • coma
  • seizures

For more personal experiences, see the message boards

A Personal Experience

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.

 

More personal experiences.

Sue sent this along:

Early Crisis Intervention

 

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 injectable 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.

 

 

✍️ Day 20: 40 Days of Thankfulness

MaryO Uncategorized , , , , , , , , , , , , , , ,

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!