📞 Webinar on How to Stay Alive Without Adrenals (BLA and Addison’s)

YOU’RE INVITED! GoodHormoneHealth Webinaron How to Stay Alive (and flourish) if have no adrenals (BLA and Addison’s)-in memory of Dr. Friedman’s patients who passed away from adrenal insufficiency 

Dr. Theodore Friedman (The Wiz) will be giving an updated webinar on how to flourish if you have adrenal insufficiency.

Topics to be discussed include:

  • How do you optimally replace adrenal hormones?
  • What laboratory tests are needed to monitor replacement?
  • When and how do you stress dose?
  • What do you if you are having surgery?
  • What do you if you are hospitalized?
  • What about subcut cortisol versus cortisol pumps?
  • There will be an opportunity for patients to share their experience on Facebook

Sunday • January 19• 6 PM PST
Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
passcode 111116
OR
+16699006833,,4209687343#,,,,*111116#
Slides and updated information sheet will be available before the webinar and recording after the meeting at slides
OR
Join on Facebook Live – https://www.facebook.com/goodhormonehealth at 6 PM

⁉️ Myth: “Each Person Requires the Same Dose of Steroid in Order to Survive…

Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”

myth-busted

Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.

After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.

All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.

There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.

It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.

Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!

To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!

~ By Karen Ternier Thames

🎤 Archived Interview with Jayne, Ectopic Cushing’s Patient

 

Mary O’Connor (MaryO) hosted an interview with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s.

Listen here.

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⁉️ Cushing’s Myths and Facts: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”

myth-busted

Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.

For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.

For more information about the different types of Cushing’s, please read: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/causes/con-20032115

Another great article regarding ectopic Cushing’s can be found here: http://www.nejm.org/doi/full/10.1056/NEJM199809243391304#.VH-80v5f2s8.facebook

MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.

http://www.blogtalkradio.com/cushingshelp/2008/01/31/tentative-date-an-interview-with-jayne-cyclical-cushings-patient

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🎤 Archived Interview: JenS discussed Bilateral Adrenalectomy (BLA)

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Theodore Friedman as cyclical pituitary Cushings.

Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson’s syndrome. Jen also has Thyroid Issues (Hashimoto’s, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006)

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/29/jens-discusses-bilateral-adrenalectomy-bla

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

⁉️ Cushing’s Myths and Facts: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”

myth-busted

Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.

For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.

For more information about the different types of Cushing’s, please read: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/causes/con-20032115

Another great article regarding ectopic Cushing’s can be found here: http://www.nejm.org/doi/full/10.1056/NEJM199809243391304#.VH-80v5f2s8.facebook

MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.

http://www.blogtalkradio.com/cushingshelp/2008/01/31/tentative-date-an-interview-with-jayne-cyclical-cushings-patient

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

🎤 Archived Interview: JenS discussed Bilateral Adrenalectomy (BLA)

 

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Theodore Friedman as cyclical pituitary Cushings.

Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson’s syndrome. Jen also has Thyroid Issues (Hashimoto’s, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006)

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/29/jens-discusses-bilateral-adrenalectomy-bla

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🎤 Archived Interview: Jackie (samsmom) and Jordan

 

 

Jackie (samsmom) & Jordan: Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam’s illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie’s oldest daughter, has recently had her adrenals removed.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

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🎤Archived Interview: Monica’s Husband Kevin, about Caretakers

 

Monica’s husband Kevin, April 24. Talking about Cushing’s from the spouse/caretaker point of view He is also Monica’s producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry. For the two years during Monica’s diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica. Monica and Kevin were married two years ago, just before Monica’s pituitary surgery

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/24/interview-with-monicas-husband-kevin-about-caretakers

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🎤Archived Interview: Terry G, pituitary patient

Terry (Terry) is a long time pituitary Cushing’s survivor.

Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing’s Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers.

In Sept 2005 the surgeon removed the infection from one area, making another area clear…..

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/17/interview-with-terry-g-pituitary-patient

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