Myths

Myths vs. Facts for Cushing’s Syndrome/Disease

Written by Dr. N. Karen Thames

Licensed Clinical Psychologist

 

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

Together, We are EPIC! #EPICTOGETHER

 

  1. Myth: “Cushings Syndrome/Disease can be healed or cured through change in diet or exercise.”

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.

 

  1. 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!”

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.

 

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

 

 

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

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:

https://youtu.be/65WtAxgP4Fo

 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

 

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

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

 

Mary Kelly O’Connor did an interview with a woman who finally found the source of her Cushing’s. In Mary’s words, “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.”

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

 

  1. 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!”

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:

https://youtu.be/6mYLvh05pkY

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

 

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

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, α 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

 

  1. “Myth: UFC’s are the Gold Standard for Cushing’s testing”

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/

http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf

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

 

  1. 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?!!!!”

Fact: I cannot 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://press.endocrine.org/doi/abs/10.1210/jc.2013-1470

 

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

#BattlegroundDiagnosis

 

  1. 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!”

 

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, 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 it’s 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!

 

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

 

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 cannot 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 cannot produce cortisol at all, my job is to pay close attention to it so that I can take enough steroids 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! <3 #EPICTOGETHER

 

  1. Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!”

 

“Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! William Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

 

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

 

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

 

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

 

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and divide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

 

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

 

Here are some ideas for helping the chronically ill person and family:

  • Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are
  • Make short visits to not overtire or over stimulate the patient
  • Send a card or make a short phone call to the sick person
  • Look for ways to help with young children
  • Send a small gift
  • Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”
  • Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

 

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

 

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

https://youtu.be/dXmYkk4pPiA

 

  1. Myth: “Cushing’s is just an excuse. You are just fat!”

 

Fact: Let me be very clear, no one WANTS Cushing’s!!! I would never wish Cushing’s on ANYONE! There are many “fat” people in the world. The idea that someone would WANT to have a life threatening, debilitating disease that completely changes one’s life, is totally absurd! The truth of the matter is that for Cushing’s patients, excess cortisol is the culprit! Patients with Cushing’s have NO control over their weight gain! Diet and exercise have absolutely NO influence on these patients. I am not trying to say that one should not eat a healthy balanced diet or try to be physically fit. What I am saying is that it can be very confusing to Cushing’s patients who eat healthy foods, exercise, count calories (even some to the point of starvation), and they STILL can’t lose weight. The reason is because calories have nothing to do with it. Rapid, unexplained weight gain is due to the amount of cortisol being produced in the body. The source of the excess cortisol needs to be addressed before any physical changes can be seen. So, no, this disease is not, nor will it ever be, an excuse for “being fat”! #EPICTOGETHER

 

  1. 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!”

 

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 every day 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, and 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 her to skip 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.

 

Refer to point system at the end of this post. 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 listed here? 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

 

  1. Myth: “All endocrinologists are Cushing’s experts and specialize in Cushing’s. You should NOT need a second opinion. You should trust your doctor! If you seek another opinion, you are just doctor hopping!”

 

Fact: How many of us have heard this? Sometimes, loved ones may be baffled at the idea of traveling across the country for expertise or seeking the help from multiple doctors. The reality is that not ALL endocrinologists have expertise in Cushing’s. Although endocrinologists do specialize in metabolic and endocrine disorders; many of them do not have the experience to be able to appropriately diagnose and/or treat Cushing’s patients. For instance, many endocrinologists specialize in treating people with diabetes. In fact, that is a very popular specialty area. Those endocrinologists may not have ever seen a patient with Cushing’s Syndrome/Disease.

 

Many patients do end up traveling for medical treatment for this reason. I do not think I have ever met a patient who WANTED to spend time, energy, money, and other resources “doctor hopping”. The entire process can be overwhelming and puts a strain on multiple areas of the patient’s life. One of the major areas is financial. Did you know that many patients have to take out loans, do fundraisers (which is very humbling), and even have to forgo using their health insurance JUST so they can receive help from someone with adequate expertise? No one would choose to do that if it wasn’t absolutely necessary.

 

If you are a patient who feels bad because you feel like your doctor does not have the level of expertise needed to appropriately and adequately handle your case, please do not feel bad. I strongly believe in intuition and following your gut. I also believe that the patient/doctor relationship is just as important as their text book knowledge. Every doctor you go to will have some level of knowledge about Cushing’s. Most endocrinologists have done further training on it. Let me say, though, that text book knowledge cannot replace experience. It IS important to seek help from a facility that is considered a “high volume center”. This means that the staff have seen enough patients with your condition to warrant truly calling themselves experts.

 

YOU know your body best! I am not saying that every single person who suspects Cushing’s has it. What I am saying is that you know if something is wrong. Ruling out Cushing’s at least warrants having a doctor on your side who has the expertise enough to do that. You do not deserve to be ignored! Keep looking until someone takes you seriously and listens!

 

  1. Myth: “Seeking a diagnosis is bad!”

 

Fact: There is nothing wrong with trying to find answers when you KNOW that something is wrong with your body! Medical mistakes are made every day. Part of the empowered stance that a patient can take involves seeking a doctor who will listen to him/her and actually look for answers!

 

In the words of our dear friend and Cushing’s advocate, Catherine Brown, “If you’re sick and you want help, there is NOTHING inappropriate about finding that help. And really, who in their right mind wants to go through tons of testing, time, headaches, stress, travel, (don’t forget doctors too!) and spend tons of money to be told you need brain surgery or life-long hormone replacement? ”

 

Catherine’s sentiments echo the sentiments of many people in the Cushing’s community. Sometimes these people are met with judgmental comments or disapproval from others for their persistence and fight with seeking a diagnosis. I have been called “obsessed” before! It is hard for patients to explain to others that they do not WANT Cushing’s but they must seek a diagnosis in order to fight for and save their lives!

 

Both times that I fought Cushing’s; I had to fight and go through extensive testing. I am reminded of when I knew the Cushing’s was back after only a year of remission following brain surgery. I most certainly did not WANT Cushing’s again! Far from it! I had been to several endocrinologists, locally, and the one at that time considered himself a Cushing’s expert. My Seattle endocrinologist began testing me again based on my suspicions and I did begin having positive labs. I was devastated! Yet, some of my loved ones actually started believing that I just wanted to have Cushing’s and should let it go! What is even more astonishing, the local endo, who claimed to be an “expert”, told me that he was convinced that I did NOT have Cushing’s again. He told me (though I was practically bed ridden by that point) that it didn’t matter how many abnormal labs I received; it would not change his mind about clearing me for surgery. I am still baffled by that. I knew I HAD to move away from him in order to save my own life! After 7 months of testing, another endo cleared me for the surgery that saved my life. As it turns out, my “OBSESSION” actually saved my life! The pathology report following that surgery confirmed that I was, indeed, very sick! In fact, so sick for so long that the actual make up of my adrenal glands had changed. Seeking help is the best thing I could have done despite the disapproval of others!

 

Please take the time to read Catherine’s blog for further insights about this myth: http://muskegfarm.blogspot.com/2012/05/diagnosis-seeking-and-other-comments.html #EPICTOGETHER

 

  1. Myth: “You have PCOS. All of your symptoms are related to PCOS and diet and exercise will cure you! Even though you have no cysts on your ovaries and your labs don’t indicate that your LH and FSH are out of proportion, you still must have PCOS and not Cushing’s!”

 

Fact: PCOS stands for polycystic ovary syndrome. It causes cysts to grow on a woman’s ovaries and can lead to hormonal imbalances. The fact is that there is some overlap with symptoms in terms of differentiating diagnoses. However, Cushing’s patients are frequently misdiagnosed with PCOS. It is hard to say why. There is a phenomenon where doctors are more resistant towards diagnosing Cushing’s. One reason for this is that medical students are actually told that they will probably NEVER see a case of Cushing’s in their medical careers. Doctors at high volume centers know that this is not the case. However, there are doctors who actually DO buy into this myth that Cushing’s is so rare that they will never see it. PCOS, on the other hand, is a diagnosis that doctors feel they are more apt to see in their patient caseload. So, because of the overlap in some symptoms, there is a tendency to over diagnose for PCOS, ironically.

 

The fact is that it is NOT appropriate to try to make a patient fit into a diagnostic box that they do not fit in just because their case defies previous stereotypes and/or misconceptions! Unfortunately, it happens more than we know.

 

Are you a Cushing’s patient who was initially diagnosed with PCOS and later found out it was Cushing’s? If so, I am sorry for such a traumatic experience. Please share your story with us. We would love to learn from you and your journey!

 

Please read more from our dear friend and Cushing’s Advocate, Robin Ess: http://survivethejourney.blogspot.com/2009/03/cushings-syndrome-in-women-with.html

 

  1. Myth: “Cyclical Cushing’s does NOT exist!”

 

Fact: Cyclical Cushing’s DOES exist! The prevalence of Cushing’s patients who cycle is much higher than was once thought. The old school way of thinking was that patients with Cushing’s had consistent and constantly high cortisol levels, causing their Cushing’s symptoms. Now, we know that many patients cycle, which means that they have PERIODS of excessive cortisol levels causing Cushing’s. However, the same patients may also have periods where their cortisol is seemingly normal or even low. There is a misconception that the disease is not as serious for these patients. This is simply not true! Patients with Cyclical Cushing’s experience the same symptoms and are very sick, particularly during times when their cortisol is high. Ironically, these patients can also experience Adrenal Insufficiency, which means that the body is not producing enough cortisol and can go into shock. Even the patients who experience Adrenal Insufficiency (AI) are still sick from their Cushing’s. The sad part is that, though there is a wealth of research on Cyclical Cushing’s, there are even doctors who do not believe it exists. Either they claim they have never seen it or they refuse to diagnose anyone with fluctuating cortisol levels, even IF that patient has periods when they have higher than normal cortisol levels.

 

Let me be very clear. Cushing’s Syndrome/Disease IS life threatening! We have lost people in the community to this dreadful disease both before and after treatment! Cyclical Cushing’s patients are at just as much risk as those who have consistently high cortisol levels. If a Cyclical Cushing’s patient does not receive adequate help and treatment, this will lead to death! In my book, there is no such thing as a “milder case”! Cushing’s is Cushing’s and WILL kill its sufferers if left untreated.

 

Experts in Cushing’s appropriately diagnose by administering multiple test measures for an extended period of time. Some tests are more sensitive than others so there are some patients who will not necessarily show abnormalities on those tests. These same patients, however, WILL have abnormalities on other tests and this is indicative of pathology and diagnostic. I have even heard doctors say that everyone gets highs at some point. I can’t even begin to explain how that makes me feel. It is absurd! People do not walk around with high cortisol levels who do not have something wrong with them. Plain and simple! The idea that someone would purposely LOOK for high cortisol levels in themselves just so they can have Cushing’s is outrageous! Cushing’s is not something that anyone WANTS!

 

If you suspect Cyclical Cushing’s, it is important to find a doctor who can follow an adequate testing and diagnostic protocol. Some people who have Cushing’s symptoms get dismissed because they come up normal on ONE test! This is not appropriate at all! If you happen to be in a low or normal cycle period, that ONE test did not pick up your high levels. Being dismissed and ignoring it will not make the symptoms go away. Only a Cushing’s EXPERT will know when it is appropriate to rule out Cushing’s!

 

  1. Myth: “People with chronic illness act like they have ‘lost’ something for no reason! It’s not like they have lost anything! As long as they manage their health, they should be able to live like they did before!”

 

Fact: People with chronic illness HAVE experienced a loss! You may have heard of the “5 stages of loss”. Well, these stages do not only apply to those who have experienced a death. Patients with chronic illness have experienced a loss, in that the life as they once knew it is no more!

 

Dealing with a major change in your life is a loss experience because you move away from life as you once knew it. It can produce the same process as experiencing a death. Elizabeth Kubler-Ross, MD, talks about 5 stages that someone goes through when dealing with the process of loss. Dr. Kubler-Ross’ very powerful research was done based on her experiences with patients who were terminally ill. However, we have learned over time that these stages apply to people dealing with loss. With chronic illness, we experience loss of our health and lives as we once knew it and have to process this very difficult transition.

 

Stage I: Denial and Isolation

 

Denial is a typical initial process of a person who is experiencing this bad time in their lives. It involves suppressing real feelings and emotions about the illness. People who deny may pretend that the problem is not there and avoid reminders that there is a problem, such as avoiding doctors’ appointments or not following through with testing. Denial can happen to the person with the illness or to loved ones, such as the caretaker or spouse, family member or friend. These people may tell you to “get over it or move on”. Or, they may avoid you when you are having a rough day or time. Patients may pretend to be well with others who cannot tolerate or handle seeing them sick or talking about their illness. Denial is usually a temporary experience and there may be intermittent periods of partial acceptance. When denial can no longer be used, it can be replaced by behaviors of isolation. Isolating oneself from friends, family, loved ones, and anyone who may elicit feelings of having to deal with this transitional period.

 

Stage II: Anger

 

Kubler-Ross (2003) states that “when the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy, and resentment. The logical question becomes, ‘Why me?” (p. 63). We express anger at other people and God.

 

Questions that may come up for the person who is angry include, “why didn’t this happen to that evil person?”, “why is the person who hurt me so terribly so healthy?”, and “Why would God allow me to go through this?”

 

Anger is displaced in all directions. We can project this anger onto others. Some people don’t understand the anger and take it personally. The person who is angry will respond favorably if he/she feels valued as a person, respected, and understood. When family, loved ones, or others react personally to the anger, however, they respond with increasing anger on their part, “only feeding into the patients hostile behavior” (Kubler-Ross, 2003), Empathy on the part of loved ones is the most effective way to deal with this process (p.65). There are a number of reasons for the anger including loss of control over one’s life, loss of independence and increased dependence on others, feeling weak, feeling like lie is unfair, and the lack of understanding from others including doctors. For many of us, we ask the question, “why did it take so long to get diagnosed and treated?!”

This current stage in life may unconsciously bring up past hurts and disappointments from childhood or other developmental relationships.

 

Stage III: Bargaining

 

When anger no longer works, we may turn to bargaining. We think that if we do something, we will get something in return. We think we may be rewarded for “good behavior”. We bargain with other people and with God. We may ask ourselves, “What if I did things differently? I might not be so sick”. Shame or guilt may cause us to bargain. “Maybe I am sick because I did…” or “Maybe I deserve to be sick”.

 

Think about some of the ways that you have used bargaining to deal with your situation. Did you bargain with doctors, loved ones, family, spouses, children, God?

 

“If I only did _______________________, then I wouldn’t have ___________________”

 

“Maybe this happened because _______________________________________”

 

“God, if I am a better person or go to church more can you please __________________”

 

Think about it. But, we soon realize that we did not cause this. Bargaining doesn’t work.

 

Stage IV: Depression

 

When the person can no longer deny the illness, the anger and bargaining are replaced with a sense of great loss (Kubler-Ross, 2003). Uncontrollable events begin to happen: when forced to undergo more surgery, have more hospitalizations, begin to have more symptoms or reoccurrence of symptoms, become weaker and rapidly symptomatic. (p. 99)

 

Loss is experienced in many forms including:

 

  • Physical changes
  • Loss of function such as developing reproductive problems
  • Financial loss due to mounting medical bills and other expenses
  • Loss of job or career (medical leave)
  • Loss of maintaining the same role as a wife and mother (needing help with the care of the children or spending less time with them because of illness), thus leading to increasing guilty feelings

 

Depression can worsen because of a lack of awareness and understanding of our needs on the part of those in our environment, including immediate family and friends. Depression is parallel with increasing problems in one’s life. For instance, as the symptoms worsen, the depression may worsen. Or as the losses increase, such as having to go on medical leave and stop working or put a career on hold, the depression may increase. (p. 100).

 

Sharing ones meaning of life, dreams and aspirations, and feelings about the process with loved ones may help to decrease depressive feelings. (p. 120).

 

Stage V: Acceptance

 

This is the stage when one accepts what is happening. It is not to be confused with being happy with what is happening. However, the denial, anger, bargaining, and depression no longer exist.

 

Think about whether you have come to acceptance with any aspect during this process. If so, write down 5 things you have come to acceptance about.

 

  1. I have come to acceptance with ____________________________________________

 

  1. I have come to acceptance with ____________________________________________

 

  1. I have come to acceptance with ____________________________________________

 

  1. I have come to acceptance with ____________________________________________

 

  1. I have come to acceptance with ____________________________________________

 

A Note about the 5 Stages

 

These 5 stages are not always linear. They can last for different periods of time and will replace each other or exits at times side by side (p. 148). According to Dr. Kubler-Ross (2003), the one thing that usually persists through all these stages is hope. For some, the hope serves as a rationalization for suffering. For others, hope is a form of temporary but needed denial. (p. 148). Hope is maintained during especially difficult times. When we still need hope, it can be painful to be met with a lack of hope from family, loved ones, or doctors. (p. 149).

 

Are you able to identify any familiar feelings from these stages when reflecting on our first interactive exercise?

 

What, if any, of the stages have you experience?

 

Have you experienced a stage more than once or any of the stages at the same time?

 

The stages that I have experienced from the 5 stages of loss include:

________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

 

One area of loss that I would like to validate is the loss of identity. This can be very traumatic, as the patient must now reframe what it means to be himself/herself. This includes all areas including one’s profession and career, identity as a parent if you have children, shifting roles in the house, and overall threat to one’s sense of self.

 

In my YouTube video, I address the issue of loss of identity. Please take the time to view it and share it with your loved ones: https://youtu.be/du9JOrd4ses

 

Part II Loss of Identity: https://youtu.be/QC28GAnu-70

 

  1. Myth: “All Cushing’s patients look exactly the same with skinny arms and legs and round belly and cheeks”

 

Fact: Interestingly, Cushing’s patients are quite eclectic in terms of their appearance. Though many patients do gain a lot of weight and present with the round belly; not all patients have these exact same features. One Cushing’s patient says, “Doctors seem to be absolutists about the appearance of Cushies. It isn’t that simple, especially when people first start getting sick”. For instance, a person will not look the same at 6 months after symptoms start as they would 3 years after symptoms start. I, for one, gained a lot of weight and became morbidly obese. I had a round belly but also always had thick arms and legs, not the appearance of a “classic” Cushing’s patient who presents with very skinny arms and legs. Other friends I have were super skinny, so when they gained weight; they never reached the point of obesity; however, these people experienced the ramifications of gaining that much weight for their physical structure.

 

I am sharing my video from my single, “Indomitable”, the theme song for the documentary, “Battleground Diagnosis: The War to Survive Cushing’s Disease”. Pay attention to how we all changed physically, but do not all necessarily look exactly the same.

 

https://youtu.be/lt5B7BfRDA4

 

  1. Myth: “Medication induced Cushing’s does not exist. How can you get sick and become overweight just because you take steroids?!”

 

Fact: We have spent a lot of time talking about myths around Endogenous Cushing’s. Endogenous Cushing’s Syndrome/Disease results from a dysfunction or derangement of the body’s own system of secreting cortisol. So, the cases where someone has a pituitary or adrenal tumor would be classified as Endogenous Cushing’s. However, steroid induced Cushing’s DOES exist! Steroid induced Cushing’s, formally known as Exogenous Cushing’s is when the source of one’s symptoms is from prolonged steroid use when being treated with steroids over a long period of time. “Exogenous means caused by something outside the body”. Exogenous Cushing’s Syndrome occurs when a person takes man made glucocorticoid medications to treat another disease.

 

Diseases that may be treated with steroids (i.e. Prednisone) include asthma, kidney diseases, residual problems from cancer treatment, arthritis, and some pain disorders, among many others. The symptoms of steroid induced Cushing’s are the same as Cushing’s caused by a tumor, though the treatment is different. These symptoms include round, red face (moon face), swelling, excessive and unexplained weight gain, skin infections, muscle atrophy, bone fractures, depression and anxiety, and fatigue.

 

If you are taking steroids for a health issue, please talk to your doctor if you are having Cushing’s symptoms. There is a myth that you will have to “just deal” with the symptoms to stay on the meds. This is not true! The first line of treatment for this is to safely and effectively, slowly wean from the steroid. Otherwise, it can be dangerous. Many patients with Exogenous/Steroid induced Cushing’s end up experiencing adrenal burnout. This is when the adrenal glands stop working and it is life threatening!

 

If you try to talk to a doctor who won’t listen, go to another doctor. Ask me. I am on my 7th local endocrinologist and still have a specialist 3000 miles away! Ha! One of my Cushing’s friends had a medical doctor say to her, “You can’t gain weight from steroids because they don’t have any calories!” Listen folks, if a doctor says this to you, PLEASE find another doctor!

 

Let’s help spread the word and dispel these myths together! Share these myths with as many people as you can! Are you a person who has yourself or have a loved one who has suffered from steroid induced Cushing’s? We would love to hear about your experience. Also, if anyone has any research or info they would like to share in here, please feel free! #BattlegroundDiagnosis

 

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

 

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

 

  1. Myth: “Adrenal Fatigue and Adrenal Insufficiency are the same thing and can both be treated with supplements”

 

Fact: Adrenal fatigue does exist. However, Adrenal Insufficiency is NOT the same thing as Adrenal Fatigue. Adrenal Insufficiency is the actual lack of an adequate amount of the life sustaining stress hormone, cortisol.

 

Just to recap: Adrenal Insufficiency means that the body is not producing enough cortisol and can go into shock if you reach the point of crisis. Sometimes people who have either experienced Adrenal Fatigue or know someone who has will say, “I can relate. I am really fatigued and stressed out as well!” It is a term used by those who feel like their adrenal glands are not working as well evidenced by fatigue and other symptoms because of mental, emotional, or physical stress. These individuals do experience these symptoms. However, people with Adrenal Insufficiency (AI) actually do not have adequate adrenal functioning due to inadequate or complete lack of the life sustaining stress hormone, cortisol. We NEED cortisol to survive.

 

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 cannot 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.

 

Signs and symptoms of Adrenal Crisis can include:

Headache/Dizziness

Lower back pain

Stomach/leg pain

Pale skin/shivering

Vomiting/Diarrhea

Lethargy/listlessness

Loss of appetite

Neurological deficits

Confusion

Low blood sugar

Low Blood Pressure

(Some people experience high Blood Pressure during crisis)

Seizures

Cardiovascular collapse

Depression

Suicidal Ideation

Irritability

May present with Shock-like symptoms

Possible loss of consciousness

(Adrenal Insufficiency United; www.AIUnited.org)

 

Cushing’s patients, for reasons described in a previous post, are prone to Secondary or Primary Adrenal Insufficiency. If you experience the aforementioned symptoms, it is not “just the flu”. I have actually had deferred treatment in the ER because they said that my “case could wait cause it was just the flu” and actually lost consciousness and almost lost my life right there in the middle of the ER. It is important to seek immediate help and insist upon getting help ASAP. Many patients have the emergency steroid shot at home to get them over until they present to the ER. If you have a loved one, please inform them of your case, what your symptoms look like, and how to get help. There may be times when you cannot advocate for yourself. For instance, when I am deep in crisis, I become so confused that I cannot even add 1 plus 1, literally. My husband has had to be my voice and advocate for me in the hospital when the staff has no clue how to treat me.

 

This video explains Adrenal Crisis in simple terms: https://www.youtube.com/watch?v=ZXVMqcG06Es&feature=youtu.be

 

  1. Myth: “You only had brain/pituitary surgery. It isn’t possible for you to have Adrenal Insufficiency or to go into Adrenal Crisis!”

 

Fact: That myth is absolutely wrong! There are various situations where Cushing’s patients experience Adrenal Insufficiency. I will review:

 

  1. Cyclical AKA Cyclic or Episodic Cushing’s patients experience Adrenal Insufficiency. Remember that Cyclic patients experience both highs AND lows. For these patients, even seemingly normal levels of cortisol can elicit AI symptoms for some. The “crashes” are life threatening and, unfortunately, even some doctors do not get this.

 

Of course I have to share a story with you. After I had my IPSS (Inferior Pertrosal Sinus Sampling, a test where they assess which side of the pituitary your tumor is on), I started having black outs. In fact, I was having 4-7 black outs a day. The local hospital had no clue how to treat me and the endo consultant (the same endo who misdiagnosed me in the first place) put his final stamp on my discharge stating that “there was no way I had a tumor” even though I had biochemical evidence of Cushing’s Disease by that point, which he saw. I was discharged and continued to have black outs. Well, we ended up reaching out to an expert in Seattle who we had just met at a Cushing’s conference a couple of weeks prior. Luckily, I had started corresponding with him after the conference and he had reviewed my case. HE was convinced that, for whatever reason, I was rapid cycling due to a change in tumor activity. In other words, my tumor was shutting on and off throughout each day. When the tumor was on, my cortisol was VERY high. But, when my tumor suddenly shut off, my cortisol would suddenly drop very low and I would crash, leading to the blackouts. We took an emergency flight to Seattle to see that endo. He came up with a plan to balance the hormone until we could get to surgery, a projected 6 months out because of insurance. It worked! Blackouts decreased. By the way, I came home to IPSS results that DID confirm a tumor so the local endo was wrong, again! Interestingly, much later, well after my brain surgery; I visited a prominent endo and “Cushing’s expert” at a world renowned hospital locally. That endo spent the entire appointment arguing with me about how there was “no way that my tumor had shut on and off and led to Adrenal Insufficiency because cyclical Cushing’s does not exist!” Needless to say, he was endo number 4 and I am currently on endo #7! Ha!

 

  1. The second situation that a Cushing’s patient can experience Adrenal Insufficiency is after Pituitary surgery. For both florid and Cyclical Cushing’s patients, the year after surgery has been referred to by a medical expert as “the year from hell!” This is because the first year after Cushing’s surgery, approximately, is spent regulating the stress hormone, cortisol (amongst other hormones that may have been impacted by surgery). Some patients lose pituitary functioning all together, unfortunately. The patients who do maintain some of their pituitary also have problems.

 

You see, Cushing’s patients go from having very high levels of cortisol to almost no cortisol at all after surgery. Because these patients’ bodies are so used to extremely high levels of cortisol; the body will go through withdrawals as the body lowers its cortisol. For this reason, if an endo is treating appropriately; he/she will start the patient on a higher level of steroid/cortisol and then gradually wean the patient, going lower and lower on the steroid on a weekly basis or even slower in some cases. As the patient lowers his/her steroid; he/she is likely to experience withdrawal symptoms. Even though the high cortisol is what made the patient sick, the patient still has an adverse reaction to the body having less cortisol in it. Some symptoms are common and expected. However, if the symptoms tip over into insufficiency or crisis, it is time to get help!

 

This is what I wrote in a previous post: “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….

 

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 cannot 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.”

 

For a Cushing’s patient who has had pituitary/brain surgery, we call the insufficiency, “Secondary Adrenal Insufficiency”. According to the National Adrenal Disease Foundation and its medical director, Paul Margulies, MD, FACP, FACE, “Primary adrenal insufficiency, also known as Addison’s disease, is caused by the total or near

total destruction of the adrenal glands and results in the severe deficiency of both cortisol and aldosterone. Secondary adrenal insufficiency, in contrast, is due to the absence of the normal stimulation to the adrenal cortex from a lack of ACTH. This results in a partial or total deficiency of cortisol, but often a normal or near

normal production of aldosterone…The most common symptoms are severe fatigue, loss of appetite, weight loss, nausea, vomiting, diarrhea, muscle weakness, irritability, and depression. Since aldosterone is usually present, low blood pressure and muscle

spasms are not as likely as they are in primary adrenal insufficiency” (Margulies, 2013).

 

Interestingly, as stated above, many patients actually experience high blood pressure during an Adrenal Crisis during Secondary Adrenal Insufficiency. Many doctors don’t realize that and will often dismiss patients who come to the ER with AI who have had pituitary surgery.

 

For more information, you can visit the National Adrenal Diseases Foundation, An Affiliate to The EPIC Foundation,  at http://www.nadf.us/

 

They have a Cushing’s Division and their medical director acknowledges Secondary Adrenal Insufficiency in Cushing’s patients. #BattlegroundDiagnosis

 

Reference

Margulies, P. (2013). Secondary adrenal insufficiency: The

facts you need to know. Great Neck, NY: NADF.

 

  1. Myth: “All Cushing’s symptoms appear all at once”

 

Fact: Most of the time, the symptoms do not “appear all at once”. This is something that doctors tend to be rigid about. If patients do not present with all of the symptoms that are “classic” symptoms of Cushing’s, they tend to be dismissed. Also, doctors sometimes dismiss patients who are at a higher level of functionality than they expect. The thing is that a patient, who knows his/her body well, may seek help for symptoms very early on. You see, symptoms tend to develop slowly. However, most Cushing’s patients I know say that there is a turning point where symptoms start progressing rapidly. For this reason, a patient’s functionality can change over time as well. In my case, I had Cushing’s while pregnant with my 4 year old. I didn’t know it at the time. I figured out that I had a history of Cushing’s while pregnant, by watching a Cushing’s episode on “Mystery Diagnosis”, but waited until after I gave birth (per my OBGYN’s instructions) to pursue a diagnosis. By that point, about 4 months postpartum, I had gone from being fairly functional with Cushing’s to completely losing functionality. I had to leave my private practice as a Clinical Psychologist and eventually became bed ridden. Please note that not all patients get to this point. Some patients are helped earlier than others.

 

It is important to seek help as early as possible. If a doctor tells you that “you don’t have ALL of the symptoms! There is no way you have Cushing’s!” find another doctor! Seriously, you know your body best! I wouldn’t wish Cushing’s on anyone! However, it is important to understand that we can’t view this disease in rigid terms. It is dangerous to do so! Many of my friends concur that, had we gotten help sooner, our symptoms would not have gotten to the severity that they did.

 

I am sharing my personal story as a way of increasing awareness. Have you made a video of your story? If so, please post it here. #EPICTOGETHER

 

Karen’s Story: https://youtu.be/89A0IFMtyUQ

Karen’s Story Part II: https://youtu.be/8CYTrveDmoQ

 

  1. Myth: “Diagnosing Cushing’s should be quick and easy! You just do one simple blood test and the doctor will know what’s wrong. Your doctor will take one good look at you and know what is wrong with you!”

 

Fact: There is a high rate of people who are misdiagnosed for a long period of time. Though there are patients who are fortunate enough to have a doctor who initiates the exploration of possible Cushing’s and the testing process; the majority of patients have a much different experience.

 

Did you know that it takes an average of 5-8 years to be appropriately diagnosed with Cushing’s? One of our Cushie warrior friends was sick for 20 years before finding an expert who finally helped her! Her life was in danger by this point. Karen Ternier Thames was sick for almost 6 years before finding experts across the country who helped her. Many accuse us of “doctor shopping”. However, one must understand that it takes expertise to diagnose and treat Cushing’s or any rare disease, for that matter. Most of the time, patients go to doctors who claim to be skilled in Cushing’s but actually do not have the expertise to appropriately diagnose and treat the patient. The patient is often dismissed, told to “diet and exercise” and continues being sick for many years, sometimes to the point of near death or an actual fatality. Many of us, for this reason, travel across the country to get treatment and surgery. For Karen, she went to Seattle. Many people go to a well-known Cushing’s expert in California. Not for luxury, but out of necessity and to fight for their lives!

 

Also, once the actual testing process is initiated, the diagnostic process can be a very long one. Testing is extensive and I have never heard of a doctor diagnosing Cushing’s after just “one simple blood test”. As I have mentioned before, because many Cushing’s patients cycle; “marathon testing” is often administered, in which multiple test measures are assessed over an extended period of time. So, the doctor doesn’t just look at ONE test to evaluate for Cushing’s. In cases where there is a tumor (s) involved; once biochemical evidence of Cushing’s is determined which can take months and sometimes years, the doctor must actually assess where the tumor is located.

 

“Radiologic studies that may be helpful in patients with Cushing syndrome include the following:

  • Abdominal CT scanning: When primary adrenal problem or suspected ectopic ACTH production suspected; presence of large adrenal mass may be adrenal carcinoma
  • Pituitary contrast-enhanced MRI: When pituitary source of excess ACTH suspected
  • Chest CT scanning: In patients with suspected ectopic ACTH production
  • Octreotide scintigraphy: May detect ectopic ACTH tumors”

(http://emedicine.medscape.com/article/117365-overview)

 

In the case of pituitary tumors, Cushing’s tumors tend to be microscopic which means they are very small. Because of this, 60% of Cushing’s tumors in the pituitary cannot be seen on imaging such as an MRI, even if it is done repeatedly. In these cases, another test, called an Inferior Petrosal Sinus Sampling or IPSS, is done. In short, this test must be done by an experienced radiologist. The endocrinology team usually accompanies the radiology team during this procedure. Vanderbilt Pituitary Center describes the IPSS:

 

“The inferior petrosal sinus sampling procedure is performed in the radiology department. This is an outpatient procedure where the patient is awake throughout the test. Patients are typically given a mild sedative and a local anesthetic. Catheters are inserted through the femoral veins and threaded to the petrosal sinuses. These sinuses lie along the internal aspect of the skull base and drain blood from the pituitary gland. Serum ACTH samples are drawn from the left and right pertrosal sinuses and peripheral vein. Thereafter, corticotrophin-releasing hormone is administered through the peripheral vein. Repeat serum ACTH samples from all three locations are obtained at 2, 5 and 10 minutes after the administration of CRH. Additional X-rays are taken to confirm the catheters are not dislodged from their site during the sampling procedure. After the catheters are removed, patients are observed for 4 hours following the procedure ensuring that no bleeding from the femoral vein puncture sites occur….To interpret the results, the ACTH from the left petrosal and right petrosal samples are compared to the peripheral samples. The ratios help to determine whether or not a patient’s Cushing’s syndrome is pituitary or from a non-pituitary source. ”

(http://www.vanderbilthealth.com/pituitary/15470)

 

The IPSS is how it was finally determined which side of my pituitary my pit tumor was on, after months of testing and biochemical evidence of Cushing’s Disease. So, as you can see, it does NOT just take one simple blood test to determine Cushing’s.

 

  1. Myth: “Chronic illness only affects the person who is sick. Their partner or loved one shouldn’t have to worry about it!”

 

Fact: Wrong! Chronic illness not only affects the person who is chronically ill; it affects everyone in the family unit. This can be a partner/spouse, children, loved one, or caretaker. I won’t say that the illness impacts others in the same way as it does the person who is sick. However, the person who lives with the chronically ill person has to go through his/her own emotional process. I have talked about the “5 stages of Loss” as it applies to the sick person. Did you know that the loved one ALSO goes through the 5 stages of loss? This includes denial, depression/isolation, anger, bargaining, and acceptance. There are various aspects of their lives which bring up these emotions which include but are not limited to:

* Changing roles in the home

*Shift in responsibilities

* Loss of income if one person has to stop working

* Financial strain because of mounting medical bills and other expenses

*Decrease in intimacy

*Overall feeling of disconnect in the relationship

*Change in parenting roles in the home with children

*Children’s upset and/or confusion about the illness and impact of the illness

*Mood symptoms and the impact on the relationships in the home

 

It has been said that the divorce rate amongst Cushing’s patients is well over 50 % some even say it is as high as 80 %. How much of an impact do you think the symptom of weight gain has on the demise of relationships? What other factors related to Cushing’s negatively impact those marriages?

 

What factors do you think impact the relationships in the homes of chronically ill patients in general?

 

This video on “The Spouse Spectrum”, a term coined by our Cushing’s survivor and advocate Melissa Moxie, may be helpful in understanding some relationship dynamics when there is chronic illness: https://youtu.be/UYN6tkZlbIY

 

  1. Myth: “You are ‘cured’ and had surgery so your physical pain should have stopped! You shouldn’t need pain management!”

 

Fact: The interesting thing about this myth is that layman, doctors, and even patients themselves believe this to be true. However, ironically, many Cushing’s patients experience even MORE pain when in remission from Cushing’s. The reason being that cortisol actually masks physical inflammation and/or pain when it is high. Though these patients have physical issues that would cause high pain; many are able to get through it because of the fact that the high levels of steroid suppress pain.

 

This is one reason why people with arthritis, knee issues, or other pain issues or ailments actually get steroid/cortisol shots. When used in appropriate doses, it serves as a medical treatment for decreasing pain in people without Cushing’s. The huge irony, here, is that the excessive levels of cortisol in Cushing’s patients is what makes them sick. This level of cortisol causes patients to be prone to more infections, have lower immunity, and more fractures and injuries. So, pain does exist in Cushing’s patients.

 

The confusion occurs when the patient has surgery, it is confirmed that the patient is in remission, yet his/her pain has increased tremendously to the point of needing a medical intervention. Once a Cushing’s patient has a BLA, adrenal surgery, pituitary surgery, or a successful treatment and enters remission; ironically he/she will notice any pain issues that were being suppressed during active Cushing’s because of the excessively high levels of cortisol.

 

Many Cushing’s patients suffer from chronic pain. Chronic pain is a huge lingering issue in Cushing’s patients. Pain management should be addressed before it becomes unbearable and the “pain can’t be chased away”.

 

Fibromyalgia is a pain disorder that is diagnosed in many Cushing’s patients post remission. It is something that is greatly misunderstood. As described by the American Fibromyalgia Syndrome Association, “Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe. Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain….The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to “push yourself” to get things done” (American Fibromyalgia Syndrome Association)

 

Symptoms of Fibromyalgia include: extreme pain, incapacitating fatigue, memory and concentration problems, insomnia, worsening pain with attempted exercise, GI problems, jaw pain, and numbness and tingling. Fibromyalgia flare ups can be triggered by multiple things including: changes in whether, depression and anxiety, excess in certain stimuli like loud noises and bright lights, certain odors, and yes STRESS! Sound familiar?!

 

Pain issues are no joke! It is serious and debilitating to have to deal with pain. Do not second guess yourself if you are dealing with pain, yet feel like no one will take you seriously because you have been “cured”. The aforementioned reasons explain why pain persists even in a state of remission. It is important for loved ones to understand these facts. It is also important for patients to seek the help from a pain specialist who understands the complexities of your medical history and how it relates to your current pain issues.

 

  1. Myth: “You just let yourself go! You are just being lazy and that is why you gained all of that weight and can’t get out and don’t do things like you used to!”

 

Fact: No Cushing’s patient WANTS to lose the level of functionality that he/she had! It may be confusing to loved ones because, as we talked about in another myth; for many patients, symptoms come on gradually and then they experience rapid decline at a certain point. So, you may have seen them function fairly well and then it seems that all of a sudden, that person is no longer functioning.

 

The fact is that patients with Cushing’s have not CHOSEN to lose functionality or control over their looks. No one CHOOSES this! When a patient gains weight, becomes less mobile, and cannot do as much as he/she used to be able to do; it can be quite traumatic. When friends, family, and/or loved ones make the statement that the person has “let himself go”, it is adding salt to the wound. It is a myth and holds no truth in it. Cushing’s patients would love nothing more than to “diet and exercise and JUST lose the weight” and attend all of the functions they used to be able to attend. This is a painful process. Please keep this in mind.

 

Now, there is a woman out there named Katie Hopkins. Apparently, she buys into the above myth! She is doing a documentary based on her “experiment” of purposely gaining 50 pounds and then “losing all of her weight JUST by diet and exercise”. It may have worked for her but she obviously is ignorant to endocrine disorders that literally make it impossible for people to lose weight in a conventional sense. Oh, I can’t even count the number of friends that I have who have literally starved themselves on 300 calorie a day diets and STILL gained weight because of Cushing’s. People like Katie Hopkins are very judgmental and lack any empathy for anyone who doesn’t fit into her little box. It’s truly sad! http://www.dailymail.co.uk/femail/article-2889824/Katie-Hopkins-BANNED-husband-having-sex-piling-pounds-fat-people-aren-t-sexy.html

 

  1. Myth: “Proactive can resolve skin problems in Cushing’s patients! Just try this solution and your face should be fine!”

 

Fact: Traditional or conventional treatments do not help abnormal presentations in Cushing’s patients. Many Cushing’s patients experience abnormal physical changes, such as the adult onset of acne, skin discoloration, and other skin problems. The solution is to target the illness which is what is causing these changes. The disease, itself, causes the acne, facial hair, bruising, thin skin, and other problems. Simple solutions will not “solve” these problems.

 

  1. Myth: “Any local surgeon can remove a Cushing’s pituitary tumor. You should not have to go outside of your town or travel for a surgeon!”

 

Fact: The fact is that many patients, if not most, have to travel to seek an expert surgeon. Cushing’s tumors have a different presentation than other tumors, even pituitary tumors. In fact, the majority of Cushing’s tumors are not even visible on imaging like an MRI, so other tests have to be used to locate Cushing’s tumors when there is biochemical evidence of Cushing’s but an MRI that can’t see it. You would think that most doctors understand this. However, non-experts do not always understand this. Some doctors will dismiss a patient who has Biochemical evidence of Cushing’s and a “normal” MRI. In my case, the location of my tumor was confirmed after an IPSS. It turns out that my expert surgeon found it hidden.

 

Now, there are a couple of reasons why people have this misconception described in the myth.

 

  1. They believe that all tumors look the same or affect people in the same way so “any neurosurgeon who is an expert in neurosurgery should be able to effectively remove it”. Again, this is NOT true! I want to stress that most of the time; Cushing’s tumors are microscopic in size. Additionally, we have to remember that these are hormone secreting tumors which affect the functioning of the pituitary. If a surgeon just goes in there without understanding how this affects the patient, severe damage can be done. They may be quick to just remove the entire pituitary, not understanding fully how this will impact the patient’s life. A skilled surgeon, understanding this, has the skill to fully explore the entire pituitary for tumors. Also, there are times when only one tumor shows up on an MRI if it is visible on imaging, but there are multiple tumors or more than one that did not show up on the MRI. Only a surgeon who is skilled in this area of expertise will explore thoroughly for this. These are life changing decisions. Sometimes, even life or death decisions. Would you really want someone to do this surgery JUST because they work at your local hospital?

 

  1. The majority of surgeries are done through the nose, known as a transsphenoidal resection. Many people hear that and assume that the risks involved are minimal. This is simply not true. This is an invasive procedure. Even more so, because a skilled neurosurgeon and skilled team needs to be present to insure that the complications are minimized. Most of the time, other team members include an ENT, or an Ear, nose, and throat doctor. There are multiple people in the operating room, most of the time over a dozen including your surgeon, assistant surgeon, ENT, nurses, assistants, etc. If the surgery is not done correctly, many things could go wrong including but not limited to: hitting an optic nerve and causing blindness, hitting an artery that causes the patient to bleed to death, and a CSF leak (Cerebrospinal fluid leak).

 

There are even doctors who buy into this reasoning for believing this myth. Before my surgery, my former eye doctor said to me, “now all they have to do is just go through that pretty little nose and yank that tumor out and you will be good as new!” Wow! Little did he know that the process is a little bit more complicated than that. Well, if doctors believe this myth, why wouldn’t layman?

 

It is also important to note that the surgery itself is not where the process ends for the Cushing’s patient. As discussed before, hormone replacement post-surgery is even more important and is also a life or death issue. As discussed in previous posts, Cushing’s patients go from extremely high levels of cortisol to extremely low levels of cortisol. This can cause shock to the body. Months are spent, post-surgery, safely and slowly weaning a Cushing’s patient off of steroid until the pituitary wakes back up. For adrenal patients or patients who have had both adrenal glands removed, he/she is dependent on a physiologic dose of steroid for life. With that said, a careful team post-surgery monitors the patient, acutely, to decide when to reintroduce cortisol back into the body with external steroids. I am still horrified when I learn that there are STILL patients who are discharged from the hospital with no hormone replacement! This can KILL someone!

 

For the aforementioned reasons, going to a “High Volume Center” is extremely important. This is a facility where your surgeon has performed many surgeries specific to Cushing’s. I fought to have my first surgery done 3000 miles away from my home for this reason. Our insurance wouldn’t give in and neither would we! LOL That is until we won! The interesting thing is that many people, loved ones, could not understand why I was fighting this hard to get a surgeon with expertise in Cushing’s surgeries because after all, “we had plenty of good enough surgeons around here”.

 

As patients, we take extra care to research every person on our treatment team, including our surgeons. If you are a loved one, trust that the patient is doing everything to have the best outcome. Our lives literally depend on it!

 

  1. Myth: “Cushing’s patients must be taking steroids because it is way too rare to have it!”

 

Fact: We have already discussed the fact that Cushing’s is rarely diagnosed but not as rare as we once thought. Because many doctors feel like Cushing’s is too rare to have, many of them assume that you must be taking steroids if your tests start showing elevated cortisol levels. It is true that steroid induced Cushing’s does exist. However, this happens when people are taking steroids to treat other diseases over a prolonged period of time. There is, however, a high prevalence of Cushing’s patients who are sick because of an internal dysfunction in their bodies, such as tumors. Individuals who have steroid induced Cushing’s are aware that they have been taking steroids to treat another illness. They are not trying to take extra steroid in order to show up like they have Cushing’s on testing. Unfortunately, Cushing’s patients are sometimes treated like they want to have high test results. This is far from the truth. When I was testing for Cushing’s, my labs started consistently coming back high. My endocrinologist, at the time, didn’t want to believe that I had Cushing’s. He kept trying to get me to tell him that I had been taking steroids! I had never taken steroids to treat any illness so he was wrong. Ultimately, I continued on with the testing process and was eventually diagnosed. My tumor was found and removed.

 

Don’t let anyone tell you that your test results are not valid. You know your life and you know your history. Even if you do have steroid induced Cushing’s, the symptoms are the same and are life threatening if not treated. For those without steroid induced Cushing’s, keep pursuing help until you get it. Cushing’s is fatal if left untreated. It is important to find the source of the Cushing’s to ultimately treat it through surgery or whatever method is most effective.

 

  1. Myth: “Your cortisol levels are high but are not high enough for Cushing’s!”

 

Fact: In my book, a high is a high is a high! If you ask any Cushing’s patient if they had milder symptoms because their levels were 2X the normal range as opposed to 3X, they will say no! Cushing’s sufferers are impacted by their symptoms period and are not any less impacted if their cortisol levels are not 3X the normal range. Why do I keep bringing up 3X the normal range? Because there are some doctors who will test patients and dismiss them as not “really having Cushing’s” if the patient does not have 3X the normal range of consistently high cortisol. The problem with that is that many patients, therefore, end up not being treated who have serious symptoms. The worst case scenario is that patients lose their lives without help. I have not found any research that states that patients MUST have 3 X the normal range in order to be diagnostic for Cushing’s. It seems to be some arbitrary number that some doctors make up in their minds based on their subjective opinion.

 

Remember this video? I share it often because what I am speaking of is what this patient experiences here. Unfortunately, this is not an uncommon theme. What is also unfortunate is that many people are misdiagnosed because of this. https://youtu.be/65WtAxgP4Fo

 

  1. Myth: “You are a ‘drug seeker’ or are ‘addicted to steroids’ if you use steroids for cortisol replacement”

 

Fact: Let me be very clear that steroids that are given to replace cortisol, which is a life sustaining hormone, are not addictive nor are they indicative of a “drug problem”. The sad part is that there are actually doctors who treat patients like addicts who need steroid replacement. I have had doctors actually say to me, “NOOOO just get off those steroids! You don’t need drugs! You don’t need those steroids!” Well, actually I do. You see, I will die without them. Our bodies naturally make cortisol, which is the stress hormone. However, because of some of our medical histories, we are not able to produce that hormone. Therefore, we need to replace it in order to survive, thrive, live, and exist. If I sound dramatic, it is because the consequence of not having enough cortisol in your body is grave. It’s not an exaggeration. These are facts! The idea of someone with a medical degree not getting that really scares me, to be honest!

 

Now, when most people hear the word, “steroids”, they think of athletes who have been busted and/or reprimanded for abusing steroids or bodybuilders who get really large on steroids. In fact, I even used to say sometimes that I “felt like a bodybuilder on crack” when I had Cushing’s because of the amount of cortisol/steroid in my body. However, I want you to know that the steroids that you read about in the tabloids are NOT the same steroids that people use to treat Adrenal Insufficiency or to prevent adrenal crisis.

 

To recap:

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.

 

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 cannot 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.

 

I also want to note that there are patients who have Addison’s/Adrenal Insufficiency who were never Cushing’s patients. They have a dysfunction in their adrenals that does not allow for the normal production of an adequate amount of cortisol produced by the adrenal glands. The rules about steroids and their need apply to these patients as well.

 

The most common steroids that are used in the treatment of patients who have Adrenal Insufficiency are Hydrocortisone/Cortef and Prednisone. A 100 mg shot of SoluCortef is administered in emergency situations when the patient is in a crisis. Again, this is NOT the same kind of steroid that you should associate with drug seeking or addictive behavior. Now, even hospitals do not always understand this and will try to triage patients or withhold steroids as if it is a controlled substance. Please understand that steroids are NOT addictive nor are they a controlled substance. People get steroid shots for knee pain, yet some patients can’t even get steroids quickly when they present with an adrenal crisis in an emergency room. This is why patients should always have an advocate with them to speak on their behalf in case they are unconscious or confused or in an altered state due to the crisis. Steroids used to treat Adrenal Insufficiency should not be treated as a controlled substance. WE need it to live! With that said, patients who present in the ER with adrenal crisis should NOT be triaged, they should not WAIT for labs to be run, and they must NOT be treated like drug addicts. These patients NEED to be seen right away.

 

http://press.endocrine.org/doi/abs/10.1210/jc.2006-0076

 

To those we have lost in our community to Adrenal Insufficiency, Rest in Peace my friends! Your legacies live on forever!

 

  1. Myth: “If you had greater faith, you would have never gotten sick! Your faith would heal you and you won’t be chronically ill if you demonstrate more belief”

 

Fact: Many of us who are chronically ill struggle with this myth. Especially because “bargaining” is a stage of loss that we go through where we wonder if we could have done something to alter our current situations. Some people even say, “Maybe if I did XYZ, God would allow me to be rid of this pain and suffering”. However, the reality is that your faith has nothing to do with it! The fact that you are sick is not a reflection of how much or how little faith you supposedly have.

 

For a while, I found myself resentful at those who implied or even blatantly said, “Karen, if you just pray and believe, that tumor will go away!” or “Karen, did you REALLY believe that God could heal you??! If you did, you would be completely healed!” I thought to myself, “As if! If they only walked in my shoes for ONE day!” I am not sick because I didn’t pray hard enough. YOU are not sick because you didn’t believe hard enough! Your chronic illness isn’t a result of you not praying hard enough. It’s not because you don’t have enough faith! You did NOT do anything to “deserve” being sick!

 

The irony is that it takes great faith to survive what we are surviving! It takes great faith to handle each day with humility, courage, tenacity, and strength. Most people could NOT go through what you are going through! What faith does is it helps us to have hope in the unseen. This hope gives you motivation and strength to get through each day. Faith adds to your life in this way. However, it is NOT the LACK of faith that is the reason for your chronic illness! So, the next time someone tells you that you are not believing hard enough, remind yourself of just how strong you REALLY are! Congratulations! You ARE a survivor!

 

  1. Myth: “You keep talking about Zebras! That means that you think you are an animal or are obsessed with Zebras!”

 

Fact: Well, maybe I am a little obsessed with Zebras! LOL Seriously, the Zebra holds symbolic meaning in the Cushing’s community and in many rare illness communities. I will post my blurb about Zebras to help you understand why it is so important to us:

 

“Zebra” is a term that is used to describe a surprising diagnosis. It derives from the saying “When you hear hoof beats behind you, don’t expect to see a Zebra”. Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore, coined this term in the late 1940s. He explained that since horses are the most commonly encountered hoofed animal for most people and zebras are hoofed animals that are less likely encountered; one would naturally guess that the hoof beats belong to a horse and not a Zebra. By 1960, this metaphor was widely known amongst medical circles. (From Wikipedia, the free encyclopedia, 2013)

This phrase continues to be drilled into the minds of Physicians in training:

 

“When you hear hoof beats, think horses, not zebras.”

So, in the medical community the term “Zebra” is universally understood as a reference to a rare condition/disease. Physicians are taught to assume the most likely explanation of the condition and therefore miss more unlikely explanations of the disease. In addition, Physicians are known to be uncomfortable with diagnosing patients with “exotic” diseases that are unlikely.

 

Ironically, this term ZEBRA has been adopted by communities of patients with rare disorders such as Cushing’s Syndrome, Adult Human Growth Hormone Deficiency, Panhypopit, and other rare diseases. Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a physician or in many cases, multiple physicians. Metaphorically, many physicians have completely lost the ability to even imagine that zebras may exist!

 

“It is frustrating indeed, to spend years being shuffled from specialist to specialist, seeking diagnosis and treatment for a condition that no one can seem to identify.” (www.medicalzebras.org, 2013)

We have started a Zebra movement. We call ourselves the “Zebra Crew”! We recognize that this is a term that represents those of us who have these RARE disorders that can go undiagnosed for many years, on average between 3-7 years! However, Zebra is not a weak term! It is a term that acknowledges how strong we are, brave, courageous, beautiful. We bond through the recognition that we have all endured being misidentified as horses!” #BattlegroundDiagnosis

 

  1. Myth: “All Cushing’s patients who do fundraisers are just asking for handouts or are just trying to con people out of money!”

 

Fact: This myth is so far from the truth! Asking for money is a very humbling experience. Usually when a patient asks for money, it is out of necessity. He/She has NO other choice!

 

I remember a couple of years ago; I was personally raising money so that fellow Cushies could travel to a conference for people who suffer from our same illness. At this conference, not only were there other people like us, but there were prominent doctors who were experts and who could offer some insights and help to all of us. Well, I reached out to an unnamed organization to ask for help, thinking that we had similar missions. Unfortunately, the president of this organization told me off and accused me of being a “scam artist”! He was irate that I would ask for money so that people could “live it up at a conference”. The sad thing is that this person did not understand how significant and life changing it was for these individuals to be able to go to this conference. Fortunately, love conquered all and I was able to help a couple dozen people attend this conference through fundraising.

 

The aforementioned example was about raising money for a conference. However, most of the fundraisers you see will be for people needing money for actual medical expenses. People raise money for travel, lodging, Copays, etc. The fact is that many, if not most patients, have to travel to find expertise care in order to be appropriately diagnosed and adequately treated for Cushing’s. Never in my life did I ever think that I would have to travel 3000 miles away from my home to get help. But, that’s what happened! Many people did not get it and still don’t. Some insurance companies don’t even want to pay for treatment. For my first surgery, we had to appeal my insurance for my $90,000 surgery. We fought for months! Our earth angel helped us fight and we ultimately won! In the meanwhile, a couple who I call my dear friends started a fundraiser for us on givefoward.com. The money that was raised in that fundraiser covered some of our expenses that were incurred as a result of having to travel out of state for my surgery. We are eternally grateful!

 

Unfortunately, it triggers some negative feelings in others when they see some people trying to raise money. Just remember that, most of the time, there is a valid reason why people are raising the money. Just put yourself in their shoes. Imagine having to worry about covering all of these expenses just to stay alive. Imagine the fight it takes to wage this war against a disease that completely changes your life! Please consider this the next time you see a fundraiser.

 

I am positing the video from my fundraiser that my friends started for me. It is an example of the sentiments that are shared by many of us who have to ask for help in order to survive. Please note that my fundraiser from 4 years ago is now inactive. I am just posting it as an example. Blast from the past!

https://youtu.be/xdHEeatmsQc

 

  1. Myth: “Your weight caused Cushing’s. You are overweight or obese and this is why you got Cushing’s. If you would lose weight, your Cushing’s symptoms would go away!”

 

Fact: Even some medical doctors buy into this myth. For whatever reason, even though medical professionals understand the facts about Cushing’s, intellectually; they still push patients to lose weight as a way of alleviating Cushing’s symptoms. Experts in Cushing’s understand that this is not helpful. The fact is that the above myth is false. Weight gain does not cause Cushing’s. Weight gain is a SYMPTOM of Cushing’s, not the cause. Obesity, in this case, is not the disease, but is a symptom OF the disease!

 

It is important to understand this. You may be trying to encourage a loved one by trying to get them to lose weight to feel better. Please realize that your loved one with Cushing’s is doing EVERYTHING he/she can to lose weight and to get healthy. Excess cortisol does not allow for a normal process.

 

In a “normal process”, there is an equation. Healthy diet plus consistent exercise= weight loss. Logically, for one to lose weight, they change their behaviors and do certain things to affect change in their physical state. People encourage us to do behavioral things to demonstrate our commitment to losing weight. “If you keep a food journal, your symptoms will go away” or “just have weight loss surgery and you will be cured” is common feedback that Cushing’s patients receive. The problem is that food journals have no impact on Cushing’s symptoms. I have known people to eat a raw food diet, no carbs, and even 200 calories a day and STILL gain weight from Cushing’s.

 

Some Cushing’s patients have had weight loss surgery, often times before a Cushing’s diagnosis. Some do temporarily lose weight. However this is not a cure and the weight will most likely come back because food is not the issue. Excess cortisol is! Cushing’s is NOT reversed by eating smaller portions!

 

On the topic of weight loss, sometimes people get confused because they may witness some weight loss in Cushing’s patients. The reaction follows the myth that if you ever lose weight, you can’t have Cushing’s. Let me be clear that it is improbable, not impossible to lose weight with Cushing’s. There are various reasons. Temporary weight loss from weight loss surgery has been discussed. Another reason is the cyclical nature of the disease in some patients. Cushing’s patients who cycle may lose weight during low cycles of Cushing’s. Sometimes doctors see the weight loss and rule out Cushing’s prematurely. This is dangerous. Even if weight loss occurs, it is sure to come back and even greater. Rare cases of weight loss from Cushing’s should not distract from the fact that weight gain and the inability to lose weight are prominent symptoms of Cushing’s Syndrome/Disease. A patient who continues to gain weight from Cushing’s will not benefit from some fad diet or behavioral changes that will supposedly “cure” the patient.

 

Don’t get me wrong. I advocate healthy eating and exercise! All of my friends who are Cushing’s patients believe in eating healthy and getting in physical activity. I just want to make it clear that these behaviors have no influence on Cushing’s symptoms. Weight gain is the symptom of Cushing’s.

 

I also want to stress that being “fat” is not the extent of Cushing’s symptoms. People who judge Cushing’s patients because they feel that they are superficially complaining about their weight should understand that weight gain is just one symptom of Cushing’s. There are many other symptoms including, but not limited to, buffalo hump, stretch marks, round face, high blood pressure, diabetes, high cholesterol, blurry vision, acne, female balding, thin skin and bruising, poor wound healing, depression and anxiety, cognitive difficulties, insomnia, and extreme fatigue.

 

Some long term complications of Cushing’s include high blood pressure, diabetes, bone loss, increase in infections, high cholesterol, muscle atrophy or muscle wasting/ weakness, depression, and post-traumatic stress symptoms. Permanent cognitive issues have been noted in Cushing’s patients as well.

 

Cushing’s is serious. It is a life threatening illness. If left untreated, Cushing’s is fatal. Losing weight will not alleviate Cushing’s symptoms. Only treating the actual disease will alleviate Cushing’s symptoms.

 

  1. Myth: “Your high cortisol levels must be due to lab error. There is NO possible way that you have Cushing’s so those labs MUST be wrong!”

 

Fact: It’s amazing how many patients are told this. Either they are told that the lab must have made a mistake or that the patient did not follow the appropriate protocol for testing and therefore it led to a false positive lab. In my case, the doctor who agreed to test me also misdiagnosed me for years. When my labs started coming back suggestive of Cushing’s; he came up with every reason why those results must have been wrong. I fought to continue moving forward with the testing process. The rest is history!

 

Lab errors do not validate Cushing’s. Abnormal labs are a RESULT of Cushing’s. Extensive testing is typical before a diagnosis. As mentioned in a previous post, Cushing’s patients typically do not receive a diagnosis from one simple blood test. Marathon testing is most common where multiple test measures are administered across an extended period of time. When a diagnosis is assigned, the patient will have gone through a very long and trying process of assessing the source of his/her symptoms.

 

Often times, patients have to “prove” that they are genuinely sick and that they are not just “eating themselves sick”. For this reason, it is very important that, if you have concerns that you may have Cushing’s, you seek the expertise of a Cushing’s expert from a High Volume Center where they have seen other patients with Cushing’s to move forward with the diagnostic process. If you don’t have Cushing’s, at least you will have gone through the appropriate protocol for assessing what is wrong. IF you do get elevated labs, do not let someone tell you that those labs are invalid. In my opinion, dismissing your labs is a way of someone not being accountable for perhaps not having expertise in Cushing’s. I feel the need to remind you that you know your body best!

 

  1. Myth: “You are OBSESSED with Cushing’s because that is all you talk about! You are bringing all of this on yourself because of your thoughts about it!”

 

Fact: No! No! No! It may be inconvenient for some to have to “listen to the Cushing’s stories”, but for the Cushing’s patient; those stories are real life! I wouldn’t wish Cushing’s on my worst enemy! Cushing’s patients don’t talk about their fight for a diagnosis, finding a competent doctor, all of the symptoms, and the hopelessness involved just for the sake of drama.

 

It takes immense focus and diligence for a Cushing’s patient to get through this entire process. I believe that we all take for granted the need to have a competent doctor on our team when we are not sick. If you just see your doctor for a common cold, a red eye, or a stomach ache, you may have never experienced the pain of not knowing what is wrong with you medically or the agony of trying to seek answers for many years. It takes, on average, 3-10 years to receive an accurate diagnosis of Cushing’s. Some of our dear friends have lived with Cushing’s for 20 years before a diagnosis. Unfortunately, some warriors do not make it due to not getting the help they need.

 

There are many steps involved in this Cushing’s journey:

 

  1. Noticing extreme changes to self physically, cognitively, and psychologically.
  2. Doing everything in one’s own power to affect empowered change including changing diet, trying to exercise, and seeking advice from others
  3. Deciding logically and intuitively that something is “definitely wrong with my body. I have lost control over my physiology and nothing I do is helping”
  4. Seeking the help of your physician
  5. If the physician does nothing and says to just “diet and exercise” or to “stop eating bread”, seeking the help of another physician
  6. Going to multiple doctors who turn you away
  7. Having to do own research to learn more about what could be going on
  8. Discovering Cushing’s and doing more research on Cushing’s
  9. Having to explain over and over again to friends, family, and loved ones that “I am not crazy. I am losing this battle and I need help!”
  10. Dealing with multiple hospitalizations, multiple health scares, and many close calls
  11. Watching people walk away because they no longer want to “hear it” and mourning their loss
  12. Finally finding an expert who can adequately diagnose and treat Cushing’s
  13. Convincing insurance to pay for surgery
  14. Having surgery to treat Cushing’s
  15. Going through hormonal changes and recovery from Cushing’s.
  16. Possible recurrence and multiple surgeries, potentially
  17. Having more people walk away because they “can’t deal with your obsessions”

 

I can go on and on about this, but I think I have made my point clear. Imagine if you had to go through even half of these steps just to ensure your own survival! Would you be able to do it? Can you imagine the focus it takes to be ones’ own advocate? The fear of losing your life to this disease?!

 

Your loved one with Cushing’s or a history of Cushing’s is STILL here BECAUSE of his/her “obsession” with Cushing’s! Let’s be grateful that they have the determination, tenacity, resourcefulness, and drive to FIGHT with all of their might! Stop looking at it as them obsessing. Rather, look at it for what it is. That person is a brave warrior, fighting on this battleground and is willing to FIGHT!

 

  1. Myth: “I know you don’t eat a lot and you have tried to work out. However, you need to run faster and workout harder and workout more! Also, if you only reduce your caloric intake to 600 calories a day; your Cushing’s will be cured and you WILL finally lose weight!”

 

Fact: This is one of the biggest ironies in the Cushing’s world! You see, Cushing’s causes weight gain, which is caused by excess cortisol, the stress hormone. In a person with active Cushing’s, more stress causes the body to pump out even more of that stress hormone, cortisol. Remember, we talked about the fact that in a “normal” person, the body pumps out an excessive amount of cortisol to compensate for trauma, pain, or stress. In Adrenal Insufficiency, the body is not able to pump out all of that extra cortisol and will crash and go into shock. However, a Cushing’s patient who is in a high already has excessively high levels of cortisol. An increase in cortisol levels beyond that will exacerbate Cushing’s symptoms.

 

What does this have to do with dieting or exercise? Well, as you can imagine, more strenuous exercise, as well as starving the body, causes increased stress in Cushing’s patients, causing MORE weight gain because of their impact on symptoms. I know people are going to argue with me and I know people are going to say that this defies logic! However, this IS a fact contrary to the myth above. I want to tell you that I, myself, was told by my physician prior to being diagnosed that I “needed to run on the treadmill even faster to stop my weight gain”. At that time, I was running every single day. As my doctor witnessed me gain weight rapidly, he gave me the feedback that I needed to run faster. You would think that someone of that intellect would think to himself that running slower than he thought I should have been running (6 versus 8 miles an hour) wouldn’t warrant gaining weight at a rate of 5 pounds a week. Eventually, I hired a personal trainer. I was strength training 3-5 times a week and eating a 1000 calorie a day diet. Technically, this is starvation based on the needs of my body. However, I was STILL gaining weight very rapidly and eventually went from 120 pounds to 270 pounds by the time of my first brain surgery!

 

You may wonder, then, why people like me are able to work out and eat normally and lose weight now. It is because I am in remission and I will be addressing this at a later date. For now, I want to stress (no pun intended) the fact that patients with active Cushing’s are not “cured” from diet and exercise and, in fact, have the opposite reaction.

 

Thanks to our Cushie warrior, advocate, and friend Catherine Brown; I am able to leave you with some research that supports this fact:

 

This article talks about the restriction of calories and its impact on cortisol and weight: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895000/

 

Cortisol does respond to high intensity workouts…Higher exertion leads to higher cortisol as mentioned here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896117/

 

Telling someone who has Cushing’s to restrict his/her calories even more or to “workout just a little bit harder” is not helpful. Though it may seem logical, it is not congruent with how the physiology of a Cushing’s patient responds. Remember, a person with Cushing’s does not follow the “normal” pattern that you might expect. I don’t advocate eating a dozen donuts or eating 3000 calories a day. I assure you, however, that your loved one with Cushing’s is not eating that much a day. You may think that because we have been socialized to think that “you are what you eat”. I always find it interesting when someone thinks that one little candy bar warrants someone putting on over 100 pounds in a very short period of time. We start to judge every little thing that goes into someone’s mouth because that is the “logical” thing to do, after all. I hope I have helped to dispel this myth today! Thank you for reading!

 

  1. Myth: “Everyone has dramatic quick weight loss after a successful surgery or treatment”

 

Fact: Surgery does not automatically reverse symptoms, including weight. In fact, for many it can be a slow process. Some people report that they don’t start losing weight until about a year and a half after surgery. For many, it takes longer than that. As mentioned in a previous post, after surgery; the recovery period can be 3-5 years. It doesn’t mean that a patient cannot see a decrease or a resolution in symptoms before that. I am just stating these facts to stress the fact that patients should not feel pressured or feel like they have failed because they don’t go back to “normal” right away.

 

In the same vein, when a patient does start losing weight, often times others will question why they were “suddenly able to lose weight”. They may even ask, “Are you sure you had Cushing’s in the first place? Why are you all of a sudden able to lose weight?” Trust me, I have recently been asked this question.

 

My response is that there is nothing “sudden” about it. I will refer to my “diet” as the “remission diet”. I was always a healthy person just like all of my Cushie friends. To the best of my ability, I ate healthy foods, was physically active, and did everything I could do to stay healthy and fit. Unfortunately, with Cushing’s, cortisol was the culprit and created a body and health that felt alien and out of control. Currently, I am not on some fad diet, I am not working out 6 hours a day, and I am not following crazy rules. I am in remission and my body is starting to respond to the second surgery that I had, yes almost 3 years ago, and is starting to re-regulate.

 

It is also important to note that Cushing’s patients deal with lingering and residual effects of Cushing’s even in a state of remission from Cushing’s. As a result of pituitary surgery, for instance, a majority of patients are left with Thyroid issues, deficiencies in female hormones, and Growth Hormone Deficiency. One might be in remission from Cushing’s, but must now deal with the aforementioned issues.

 

It is a myth that things go back to normal right away and that a patient can just drop weight instantly. Every patient is different and each patient has his or her own story. I find it very important to connect with each other and support each other.

 

There is power in YOUR voice! #EPICTOGETHER

 

  1. Myth: “Just take antidepressants or anti-anxiety meds and you will be cured from Cushing’s!”

 

Fact: When people hear that cortisol is the stress hormone; they assume that somehow “controlling” your stress will naturally lower your cortisol, thus curing you from Cushing’s. This is NOT true and is a myth!

 

Anxiety and depression are prominent SYMPTOMS of Cushing’s in some patients. Anxiety and depression do not CAUSE Cushing’s. It is analogous to how obesity is a symptom and not a cause of Cushing’s. Long standing excess cortisol is correlated with the onset of both depression and anxiety in Cushing’s patients.

 

Did you know that many Cushing’s patients are misdiagnosed with Bi-polar disorder and other psychiatric illnesses? Behaviors that are caused by high cortisol are often misinterpreted as manic episodes. Many Cushing’s patients are dismissed when they vocalize concerns about having a medical condition. Although there is a high prevalence of anxiety and depression in the Cushing’s community; one must directly deal with the source of the Cushing’s in patients. Unfortunately, many patients are given anti-anxiety medications or anti-depressants in efforts to target the Cushing’s and the reality is that this will not work. One must treat the Cushing’s and then other residual symptoms will respond.

 

  1. Myth: “Children do not get Cushing’s! Your child is too young to have Cushing’s. Just make them diet and exercise!”

 

Fact: With such a focus in our society on the “obesity epidemic”, parents are often blamed and talked about negatively if their children are overweight. I agree that we should aim to make our children as healthy as possible. Unfortunately, though, the harsh reality is that Pediatric Cushing’s DOES exist and is real! I am not saying that every overweight child has Cushing’s. However, there are many children with Cushing’s who go undiagnosed, sometimes into adulthood.

 

With hormonal changes and growing bodies, having a body that feels out of control for a child can feel very overwhelming. Most pediatricians are trained to give the “diet and exercise” lecture if they see a child who is overweight. As parents, we must advocate for our children. Here are some clues that something may be wrong with a child with possible Pediatric Cushing’s:

 

  1. Your child eats well balanced meals but continues to gain weight that seems unexpected and out of control
  2. Your child is actively involved in dance, sports, or other physical activities but still can’t lose weight and continues to gain weight
  3. Your child’s physician expresses concerns about stunted growth in the child
  4. Your child is exhibiting mood swings or angry, anxious, or depressed moods that seem unusual or uncharacteristic
  5. You know that your child doesn’t “just eat” and the eating habits of your child doesn’t warrant the amount of weight gained
  6. Along with the weight gain, your child seems to have random infections or other ailments that seem strange and cannot be explained

 

In the Cushing’s community, we call the mothers, “Cushie Warrior Mommas”. This is because of the endless fight that the mothers battle for the sake of their children. If you are a warrior Momma or if you are someone who survived Pediatric Cushing’s, we would love to hear your comments.

 

One of my dear friends, Donna Sellers, has an organization dedicated to increasing awareness of Pediatric Cushing’s and providing support to families who are impacted by the disease. She, too, is a Cushie Warrior Momma who continues to fight for her son, John, since the age of 5. Please take the time to visit her page and give your support at http://www.jfcainc.com

 

  1. Myth: If you get a “normal” test result, it confirms that you don’t have Cushing’s.

 

Fact: Many non-experts in Cushing’s will dismiss a patient after one normal test result. This is not adequate protocol, as many patients with Cushing’s cycle. For patients with Cyclical Cushing’s symptoms, the doctor should test thoroughly enough to find their pattern for high cortisol levels.

 

Adequate and appropriate testing requires multiple test measures over an extended period of time. For this reason, testing can take months. Florid Cushing’s refers to Cushing’s where the patient has consistent and constant high levels of cortisol. For these patients, they will always have abnormal test results. However, in patients who cycle, there are periods when their cortisol is seemingly normal or sometimes even low, as I have discussed in previous posts. It can be dangerous to dismiss these patients if their high cortisol patterns are not adequately assessed because symptoms in these patients are just as impactful and damaging as in Florid Cushing’s patients.

 

There are doctors who will only diagnose a patient with Cushing’s if their pathology is Florid in nature and if their cortisol levels are at least 3X the normal range. You may feel discouraged if you have visited such a doctor and you don’t meet their criteria. However, I encourage you to keep fighting. YOU know your body! Find someone with expertise in Cyclical Cushing’s and who knows the appropriate way of assessing and treating it. You are a warrior!

 

  1. Myth: “If doctors don’t see a tumor on your scans, then you don’t have a tumor and you don’t have Cushing’s.”

 

Fact: This myth is NOT true! If there is Biochemical evidence of Cushing’s but it doesn’t show up on imaging, KEEP LOOKING! The fact is that 50-60% of Cushing’s Pit tumors are not visible on an MRI because they are microscopic and/or hidden.

 

If there is Biochemical evidence of Cushing’s, but a tumor is not found on initial imaging, further testing is needed. The other issue is that Pituitary Cushing’s is not the only form of Cushing’s. So, the tumor (s) may not be in the pituitary and may be in a place that the doctors have not thought of. This is referred to as ectopic Cushing’s. Testing to determine the source of Cushing’s is described below.

 

As described in a previous post; In cases where there is a tumor (s) involved; once biochemical evidence of Cushing’s is determined which can take months and sometimes years, the doctor must actually assess where the tumor is located.

 

“Radiologic studies that may be helpful in patients with Cushing syndrome include the following:

  • Abdominal CT scanning: When primary adrenal problem or suspected ectopic ACTH production suspected; presence of large adrenal mass may be adrenal carcinoma
  • Pituitary contrast-enhanced MRI: When pituitary source of excess ACTH suspected
  • Chest CT scanning: In patients with suspected ectopic ACTH production
  • Octreotide scintigraphy: May detect ectopic ACTH tumors”

(http://emedicine.medscape.com/article/117365-overview)

 

In the case of pituitary tumors, Cushing’s tumors tend to be microscopic which means they are very small. Because of this, 50-60% of Cushing’s tumors in the pituitary cannot be seen on imaging such as an MRI, even if it is done repeatedly. In these cases, another test, called an Inferior Petrosal Sinus Sampling or IPSS, is done. In short, this test must be done by an experienced radiologist. The endocrinology team usually accompanies the radiology team during this procedure. Vanderbilt Pituitary Center describes the IPSS:

 

“The inferior petrosal sinus sampling procedure is performed in the radiology department. This is an outpatient procedure where the patient is awake throughout the test. Patients are typically given a mild sedative and a local anesthetic. Catheters are inserted through the femoral veins and threaded to the petrosal sinuses. These sinuses lie along the internal aspect of the skull base and drain blood from the pituitary gland. Serum ACTH samples are drawn from the left and right pertrosal sinuses and peripheral vein. Thereafter, corticotrophin-releasing hormone is administered through the peripheral vein. Repeat serum ACTH samples from all three locations are obtained at 2, 5 and 10 minutes after the administration of CRH. Additional X-rays are taken to confirm the catheters are not dislodged from their site during the sampling procedure. After the catheters are removed, patients are observed for 4 hours following the procedure ensuring that no bleeding from the femoral vein puncture sites occur….To interpret the results, the ACTH from the left petrosal and right petrosal samples are compared to the peripheral samples. The ratios help to determine whether or not a patient’s Cushing’s syndrome is pituitary or from a non-pituitary source. ”

(http://www.vanderbilthealth.com/pituitary/15470)

 

The IPSS is how it was finally determined which side of my pituitary my pit tumor was on, after months of testing and biochemical evidence of Cushing’s Disease. Left to the endo who I initially convinced to start testing me; I would have been dismissed as not having Cushing’s after my MRIs could not find the tumor. I had to travel 3000 miles away from my home to find experts who were able to adequately read my data and treat me. During surgery, it was confirmed that my tumor was, in fact hidden, which is why it could not be seen on imaging.

 

Find an expert who is familiar on the different test methods for assessing the source of Cushing’s. Do not allow yourself to be dismissed or invalidated after just one blood test or if there is biochemical evidence of Cushing’s but there is difficulty finding a tumor on imaging.

 

  1. Myth: “I shouldn’t retain copies of my labs because I trust my doctor and everything he/she tells me”

 

Fact: ALWAYS keep organized medical records for yourself, including copies of ALL of your labs! This may seem obsessive but it is important. We need to be advocates for our own health. Taking charge of your own health means trusting yourself as much as your doctor. Yes, your doctor has medical expertise, but you must be invested in what is going on with you.

 

Quick story: I just saw my local endo yesterday. He noticed that my primary endo from another state changed my Thyroid medications. The change was made due to lab results from my visit to Seattle this past January. The funny part is that those lab results happened to be exactly the same results from labs that were done locally back in November. When I saw those lab results back in November, I thought to myself, “it looks like these labs suggest that the dose of my Thyroid meds is too high”. I never heard from my doctor so I just let it go. Now days, I NEVER do that. This one time, though, I decided to trust the expertise of my doctor and I trusted that he wouldn’t drop the ball.  “Surely he cares about me as a patient enough to not just ignore relevant labs”, I thought. Well, he did drop the ball. During my doctor’s visit yesterday, he actually said out loud, “Hmmm, well it looks like for whatever reason, I didn’t change your medication when I should have based on your labs in November”. It was so nonchalant. Here’s the problem though. When my Thyroid meds are too high, it causes an adverse reaction with my cortisol and it tends to make me metabolize my medication that replaces my cortisol too quickly. This can lead to adrenal crises and this is potentially life threatening. I had been feeling off for some time. Instead of following through, I let it go even though my doctor should have acted.

 

What is my point? YOU are in charge of your health. I know it can be hard when you are really sick. If you are not in the position to advocate for yourself in this way; advocate for yourself by getting support. Inform your spouse, caretaker, loved one about your health. Have someone help you organize your records. Find an organization that can offer support to you.

 

You should have a trusting relationship with your doctor. However, trust YOURSELF enough to be in charge! Keep copies of your labs, period! 🙂

 

  1. 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!”

 

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. In a person with Adrenal Insufficiency; NO amount of coping skills can “control” one’s physiological response to stress. #‎EPICTOGETHER

 

  1. Myth: “One form of Cushing’s is worse than the others”

 

Fact: All four known causes of hypercortisolism are deadly if left untreated.

#EPICTOGETHER