⁉️ Myths and Facts about Cushing’s: “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: “All Cushing’s patients have the exact same symptoms

Myth: “All Cushing’s patients have the exact same symptoms and the level of illness is the same for everyone. If you do not have ALL of the classic symptoms of Cushing’s, then you must NOT have Cushing’s Syndrome/Disease!”

myth-busted

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s.

For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain.

I (Karen Ternier Thames), for one, started trying to get help after gaining my first 30 pounds because I KNEW that something was wrong with my body. Had I received an appropriate diagnosis, I probably would not have gained the 150 pounds I ended up gaining in 5 years.

Regardless of the reason, it is a myth that all Cushing’s patients gain the same amount of weight. The following are other additional reasons that an endocrinologist gave me for supposedly not meeting the criteria for Cushing’s when I was misdiagnosed: “1. Your stretch marks are not purple enough”, 2. “Your buffalo hump is not large enough”, 3. “You are not THAT fat!”, 4. “Cushing’s patients do NOT have children”, and 5. ” your face does not look like a classic moon face”. These are some of the reasons why, 2 years earlier, this same doctor dismissed apparently high cortisol levels, and didn’t even tell me, leading to several more years of suffering!

So, not all Cushing’s patients are obese, not all Cushing’s patients gain the same weight at the same rate, not all Cushing’s patients have the same size buffalo hump or the same round moon face. There are variations in these symptoms. IF you are experiencing extreme changes in your body regardless of diet and exercise and its not influenced by external factors, then it is time to speak up!

It is important to raise concern with your doctor if you do have ANY Cushing’s symptoms. Please do not be inhibited if you do not show every single symptom!

Myth: “Men1 and Men2 are the only genetic causes of Cushing’s”

Myth: “Men1 and Men2 are the only genetic causes of Cushing’s”

myth-busted

FACT: This is a Myth. More current research has explored multiple etiologies of Cushing’s. It was once thought that heredity had no influence on the development of Cushing’s Syndrome/Disease and our knowledge was once limited in this sense. Researchers have done more work in terms of exploring genetic factors in the onset of this disease. *~Robin Ess (Cushing’s educator and advocate)

The following causes for Cushing’s have all been explored:

1. Men 1

2. Men2

3. FIPA

4. CAH/BAH

5. PRKAR1A(protein kinase,cAMP-dependent, regulatory, type I, ? gene)

http://www.medscape.org/viewarticle/564106_2

6.(PDE11A)

http://www.medscape.org/viewarticle/564106_4

http://www.medscape.org/viewarticle/564106_6

7.PRKACA

http://www.nature.com/nrendo/journal/v10/n8/pdf/nrendo.2014.89.pdf?WT.ec_id=NRENDO-201408

http://www.ncbi.nlm.nih.gov/pubmed/24700472

http://www.nature.com/ng/journal/v46/n6/full/ng.2956.html

https://www.genomeweb.com/sequencing/exome-sequencing-study-narrows-new-cushings-syndrome-gene-culprit

8.ARMC5

http://www.sciencedaily.com/releases/2014/10/141013090455.htm

http://www.nejm.org/doi/full/10.1056/NEJMoa1304603

Myth: UFC’s are the Gold Standard for Cushing’s testing

Myth: UFC’s are the Gold Standard for Cushing’s testing

myth-busted

Fact: UFC stands for Urinary Free Cortisol. In layman’s terms this test assesses cortisol by collecting urine for 24 hours. It was once thought that this was the gold standard and the end all and be all in terms of assessing Cushing’s in a patient. What we now know is that this is not necessarily true. Though this test is helpful in assessing for Cushing’s in some patients, not all patients have positive labs with this test, even if they DO, in fact, have Cushing’s.

There are various theories as to why. Cyclical Cushing’s patients also tend to report having a lower prevalence of positive UFCs in their test batteries.

Cushing’s experts understand that the most effective way to test for Cushing’s, especially in cases where it is suspected that the patient is cycling, is to administer multiple test measures across an extended period of time.

The following links may be helpful:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2978784/

Click to access LimitationsSC_UFC_dex_mildCS.pdf

http://survivethejourney.blogspot.com/2008/08/when-gold-standard-becomes-tarnished.html

 

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.

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: It is MY fault that I got Cushing’s…

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!”

myth-busted

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: “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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Myth: Cushing’s Syndrome/Disease can be healed or cured

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

myth-busted

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.

⁉️ Myth: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…

Myth: Even though you are chronically ill, you should have the same amount of energy every day. “You look SO good and you went to that party last month! Why can’t you come to MY party?!” When you say you are not well enough to do something, you are just making excuses. You could do it, just like you did that other thing; you are just choosing not to!

myth-busted

Fact: You may have heard me talk about “The Spoon Theory”. It was created by someone named Christine Miserandino, to explain the experience of someone with chronic illness in terms of using energy to live and to complete tasks every day. Though the myth assumes that one should have the same amount of energy all the time; the fact is that energy levels fluctuate and people who are chronically ill must make conscious decisions about what they can spend their energy on.

Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day. Miserandino states that “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to”. Most people who get sick feel a loss of a life they once knew. When you are healthy, you expect to have a never ending supply of spoons. But, when you are not well, you need to count your spoons to keep track and you can never forget about it or take it for granted. Each task costs a spoon and each spoon is not to be taken for granted. Miserandino (2010) asks, “Do you know how many spoons people waste every day?”

Patients use the metaphor of a banking system. In this system, patients must make a withdrawal of a spoon every time they complete a task. Cushing’s and Adrenal Insufficiency patients talk about the “Cortisol Bank” metaphor. The concept is the same and the idea is that certain stressors and/or tasks cause one’s body to make a cortisol withdrawal from the body. Bad things happen when there is a cortisol deficit, meaning that there is not enough cortisol in the body for one to live everyday because of the amount of cortisol that has already been used up. If a person continues to draw from the bank on an account that is already negative, the situation can become worse and worse as each day passes.

Something needs to happen in order to start making appropriate deposits. This can include, taking more medication (stress dosing or an emergency shot), resting, getting adequate physical and emotional support and help, and saying “NO!”. Even when in a deficit, many patients have a difficult time saying “no” to an invitation to an event, completing a task, or engaging someone in a way that will use up more energy because of their fear of their loved one’s reactions. Much of the time, this fear is warranted because of the actual reactions they have received. Ever heard, “But you volunteered for the bake sale last week! You must be better! Why can’t you come to church this week?!”. You may have heard something similar.

It is important for loved ones to understand the amount of “spoons” it takes for a chronically ill person just to get through every single day. EVERYTHING costs spoons! The amount of spoons paid by each person varies from person to person. It all depends on that individual’s situation, body, level of illness, etc. What is common for all, though, is that spoons must be used and eventually those spoons run out. In order to avoid becoming sick or to recuperate from getting sick, the chronically ill patient must evaluate how he/she will use spoons and what tasks can be feasibly completed that day or week. Please understand that when the chronically ill patient says, “YES” to you; he/she is making a conscious choice to use up spoons to meet your need, request, or demand. Talking on the phone, going out to lunch, making dinner, coming to your event all required a sacrifice of another task that day or week. Your friend may have come to lunch with you but that required that she skipped washing the dishes that day or washing her hair, or is even giving up doing something important the next day. Instead of being angry at your friend, please consider why the request is denied at times.

spoons-mythsRefer to the attached picture. This is not an exact science but gives some idea of the spoon bank. If you have time, try doing this exercise: Lay out 8-12 physical spoons. As you complete certain tasks throughout the day, use this chart to subtract spoons from your pile.

Each and every thing requires a spoon. Taking a shower, washing your hair, cooking, cleaning, watching a movie, going out to lunch, working, writing this post (Ha)! When you are done with your day, notice how many spoons you have left. Observe your feelings after this exercise. You can even do it for a week. Lay out a certain amount of spoons for every day for seven days. If you go into a deficit, borrow spoons from the following day. However, if you do borrow spoons; you must take away a task that you WERE planning to originally do that day. Notice what happens and notice how you feel at the end of the week.

You can view “The Spoon Theory” in its entirety at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Can you think of any other tasks that are not on this chart? Help our friends who are doing the activity. List those tasks and assign how many spoons each task will require.
Spoon Bank
Get out of bed- 1 Spoon
Shower- 2 Spoons
Attend Special Event- 5 Spoons
Go out for Coffee- 4 Spoons
Drive- 4 Spoons
Make a Phone Call- 3 Spoons
Work- 5 spoons
Play Games-3 Spoons
Clean the House- 5 Spoons
Have a Meal- 2 Spoons
Walk the Dog- 4 Spoons
Study- 5 Spoons
Watch TV- 3 Spoons
Ironing- 5 Spoons
Exercise- 4 Spoons
Shopping- 4 Spoons
Read- 2 Spoons
Catch Public Transport- 4 Spoons
Cook- 4 Spoons

 

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⁉️ Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”

Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!

Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis

Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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