⁉️ Myths and Facts about Cushing’s: After a “cure” for Cushing’s, everyone heals and goes back to normal.

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal. All Cushing’s patients can easily heal with no repercussions after Cushing’s. After pituitary surgery or a Bilateral Adrenalectomy (BLA), life is great and being “cured” means having a “normal” life! After all, surgery is a “cure” and about 6 weeks later, you are back to normal. “Say, you had surgery XYZ long ago! Shouldn’t you be better by now?!!!!”

myth-busted

Fact: I can not even tell you how many people asked me “aren’t you better yet?!” after both of my surgeries! There are too many to count! There is a misperception that surgery means a cure and therefore, healing should happen magically and quickly. No! No! No! This is far from the truth.

The sad reality is that even some medical doctors buy into this myth and expect quick healing in their patients. However, they are not living in their patients bodies nor have they obviously read the extensive research on this. Research has shown that the healing process after surgery is a long and extensive one. One endocrinologist, expert from Northwestern, even referred to the first year after pituitary surgery for patients as “the year from hell”! He literally quoted that on a slide presentation.

It takes at least one year after pituitary surgery, for instance, to even manage hormones effectively. Surgery is invasive and hard. However, the hardest part comes AFTER surgery. This is when the body is compensating for all of the years of hormonal dysregulation and the patient is trying to get his/her levels back to normal.

There is a higher rate of recurrence of Cushing’s then we once thought. This means that after a patient has achieved remission from this illness, it is likely to come back. In these cases, a patient faces other treatments that may include radiation, the same type of surgery, or an alternative surgery.

For many pituitary patients who experience multiple recurrences, the last resort is to attack the source by removing both adrenal glands. This procedure is known as a Bilateral Adrenalectomy or BLA. In these cases, it is said that the patient “trades one disease for another”, now becoming adrenally insufficient and having Addison’s Disease. Both Pituitary and Adrenal patients are faced with a lifetime of either Secondary or Primary Adrenal Insufficiency.

Adrenal Insufficiency is also life threatening and adrenal crises can potentially lead to death. Additionally, research says that BLA patients take, on average, 3-5 years for their bodies to readjust and get anywhere near “normal”. Most patients will tell you that they never feel “normal” again!

Think of these facts the next time you feel tempted to ask your friend, family, or loved one, “why is it taking so long to get better after surgery?”. Remember that in addition to the aforementioned points; problems from Cushing’s can linger for years after surgery! One Cushing’s patient stated, “I’m 5 years post-op and I STILL have problems!” This mirrors the sentiments of many of us in the Cushing’s community. Please be conscious of this when supporting your loved one after treatment.

You can find more information in the following links:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2011.04124.x/abstract;jsessionid=CC58CF32990A60593028F4173902EC47.f03t03?deniedAccessCustomisedMessage&userIsAuthenticated=false

http://press.endocrine.org/doi/abs/10.1210/jc.2013-1470

http://press.endocrine.org/doi/abs/10.1210/jc.2012-2893

 

Written by Dr. Karen Thames of  Empowering People with Invisible Chronic Illness – The EPIC Foundation

⁉️ Myths and Facts about Cushing’s: “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 | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

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

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal.

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal. All Cushing’s patients can easily heal with no repercussions after Cushing’s. After pituitary surgery or a Bilateral Adrenalectomy (BLA), life is great and being “cured” means having a “normal” life! After all, surgery is a “cure” and about 6 weeks later, you are back to normal. “Say, you had surgery XYZ long ago! Shouldn’t you be better by now?!!!!”

myth-busted

Fact: I can not even tell you how many people asked me “aren’t you better yet?!” after both of my surgeries! There are too many to count! There is a misperception that surgery means a cure and therefore, healing should happen magically and quickly. No! No! No! This is far from the truth.

The sad reality is that even some medical doctors buy into this myth and expect quick healing in their patients. However, they are not living in their patients bodies nor have they obviously read the extensive research on this. Research has shown that the healing process after surgery is a long and extensive one. One endocrinologist, expert from Northwestern, even referred to the first year after pituitary surgery for patients as “the year from hell”! He literally quoted that on a slide presentation.

It takes at least one year after pituitary surgery, for instance, to even manage hormones effectively. Surgery is invasive and hard. However, the hardest part comes AFTER surgery. This is when the body is compensating for all of the years of hormonal dysregulation and the patient is trying to get his/her levels back to normal.

There is a higher rate of recurrence of Cushing’s then we once thought. This means that after a patient has achieved remission from this illness, it is likely to come back. In these cases, a patient faces other treatments that may include radiation, the same type of surgery, or an alternative surgery.

For many pituitary patients who experience multiple recurrences, the last resort is to attack the source by removing both adrenal glands. This procedure is known as a Bilateral Adrenalectomy or BLA. In these cases, it is said that the patient “trades one disease for another”, now becoming adrenally insufficient and having Addison’s Disease. Both Pituitary and Adrenal patients are faced with a lifetime of either Secondary or Primary Adrenal Insufficiency.

Adrenal Insufficiency is also life threatening and adrenal crises can potentially lead to death. Additionally, research says that BLA patients take, on average, 3-5 years for their bodies to readjust and get anywhere near “normal”. Most patients will tell you that they never feel “normal” again!

Think of these facts the next time you feel tempted to ask your friend, family, or loved one, “why is it taking so long to get better after surgery?”. Remember that in addition to the aforementioned points; problems from Cushing’s can linger for years after surgery! One Cushing’s patient stated, “I’m 5 years post-op and I STILL have problems!” This mirrors the sentiments of many of us in the Cushing’s community. Please be conscious of this when supporting your loved one after treatment.

You can find more information in the following links:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2011.04124.x/abstract;jsessionid=CC58CF32990A60593028F4173902EC47.f03t03?deniedAccessCustomisedMessage&userIsAuthenticated=false

http://press.endocrine.org/doi/abs/10.1210/jc.2013-1470

http://press.endocrine.org/doi/abs/10.1210/jc.2012-2893

 

Written by Dr. Karen Thames of  Empowering People with Invisible Chronic Illness – The EPIC Foundation

Myth: “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 | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki