Cushing’s Myths and Facts

⁉️ Myths and Facts about Cushing’s: It is MY fault that I got Cushing’s…

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Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick! If I would have just done XYZ, this would not be happening to me!”

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Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth. We NEED to dispel this myth my friends! Patients themselves assume responsibility, accountability, and self blame for becoming ill.

To compound all of that, patients are often told by loved ones, family, and sometimes even their churches or other supports that there is something that THEY could be doing or haven’t done that has caused their declining health. “If you would just follow that raw food diet, then all of your symptoms would go away”, “Juicing is the answer! I told you to juice and you wouldn’t get those tumors!”, Sometimes, you are told that if you would just pray harder or have greater faith, then there is no way that you would be sick right now. And my absolute favorite, “you are just too obsessed with being sick and having Cushing’s!  Stop thinking that you have it and it will go away!”.

Now, don’t get me wrong, I find value in “positive thinking” and affirming health, wealth, and all kinds of great things. This helps build up strength and personally keeps me motivated, especially during the times that I feel like absolutely throwing in the towel and giving up!

However, I am NOT the reason and YOU are not the reason for this war with this dreadful disease. What many people don’t understand is how tenacious, brave, courageous, and INDOMITABLE you are! Cushing’s patients do not just get surgery and then everything is magically OK.

Many patients have to go through multiple surgeries, sometimes radiation, sometimes years of testing to find the ultimate source of the disease, even after having several organs messed with. Even after patients obtain their “cure”, they are faced with residual and lingering negative effects of the illness, other hormone dysregulation issues, and the anxiety and fear of a recurrence which is based in absolute reality.

There are people, like myself, who are in remission from Cushing’s, BUT we now have Addison’s Disease/Adrenal Insufficiency as a result of removing vital organs in order to save our lives from Cushing’s. So, are we to think that Adrenal Insufficiency is ALSO our faults every time we near death after an adrenal crisis?! NO! NO! NO!

This is NOT your fault! This is NOT your doing! STOP blaming yourself! The best you can do is to FIGHT! Take an empowered stance by saying “NO” to those who won’t listen. Say “NO” to those who project blame onto you and tell you that this is just a “fat person’s excuse to stay fat”. You are not just a “fat person”! YOU are an amazing person who is fighting for your life!

Let me be clear that this blaming is common and we all do it. In my “5 stages of Loss” series on Youtube; I address the “Bargaining” stage of loss, in which we assume responsibility for getting sick or even for getting better.

Everyone should watch this to understand why and how we do this:

Remember, you are a survivor! YOU are Indomitable!!! This is NOT your fault! You WILL overcome!

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

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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?!!!!”

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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

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

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

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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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⁉️ Cushing’s Myths and Facts: Cushing’s Syndrome/Disease can be healed or cured

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Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.

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Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.

Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.

The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.

⁉️ Cushing’s Myths and Facts:: “Each Person Requires the Same Dose of Steroid in Order to Survive…”

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

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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: YOU are the problem and the reason…

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Myth: YOU are the problem and the reason for your cortisol levels. Having issues with too much or too little cortisol, the stress hormone, means that YOU are stressing too much or are too anxious. “YOU could control your levels if you would JUST calm down!”
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Fact: YOU are NOT the problem! The dysfunction in your body is the problem. It is true that cortisol is your stress hormone or fight or flight hormone. This hormone helps your body compensate for and deal with trauma or stress, both physical and emotional. So, yes, your body does have a reaction to stress.
However, for people with Cushing’s, that hormone goes haywire. Too much cortisol leads to Cushing’s symptoms and having too little cortisol leads to Adrenal Insufficiency. Normally, our bodies’ response to stress is to pump out 10X the amount of your baseline cortisol to cope. If it is not able to do this, it will go into shock and can lead to death unless the emergency protocol is followed with an emergency injection of steroid. No amount of coping skills can “control” one’s physiological response to stress.

⁉️ Myths and Facts about Cushing’s: Cushing’s is RARE, No one has Cushing’s!

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Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

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Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.

In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non-experts tend to not test accurately and adequately for Cushing’s.

With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.

The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:

Please review the following links:
http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf
http://survivethejourney.blogspot.com/2008/11/new-research-has-shown-cushings.html

* Dr. Karen Ternier Thames

⁉️ Cushing’s Myths and Facts: Cushing’s is RARE, No one has Cushing’s!

MaryO Cushing's Awareness Challenge , , , , , ,

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

myth-busted

Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.

In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non-experts tend to not test accurately and adequately for Cushing’s.

With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.

The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:

Please review the following links:
http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf
http://survivethejourney.blogspot.com/2008/11/new-research-has-shown-cushings.html

* Dr. Karen Ternier Thames

Cushing’s Myths and Facts

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Dr. Karen Thames has been sharing these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.

Find these pages here, under the Cushing’s Myths and Facts category.

Thanks, Karen!

⁉️ Cushing’s Myths and Facts

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Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.

Find these pages here, under the Cushing’s Myths and Facts category.

Thanks, Karen!