Ask Dr. Karen – Answers
April 2018 – Cyclical Cushing’s
Question: I have been sick for quite some time and was diagnosed with hypothyroidism, and after trying three different types of thyroid medications, I still was not getting better. In fact I was getting worse. My endocrinologist decided to do the morning ACTH and cortisol blood draw. Normal results. They left it at that, but I was still sick. I did my own saliva test and it came back low in the AM and high at the late night. I showed my endocrinologist my results along with my pictures of my before and afters. She has since ordered 2 more late night saliva and 24 hour urine test which I am set to take in May before my follow up with her. My problem that I have is that I did a second cortisol saliva test on my own the day that I saw her and the results came back at normal during the day and low normal late night. I don’t want them to miss something, what could be happening with the low normal cortisol level? I am still fatigued every day. My thyroid medicine was upped and it is still not helping with the fatigue or weight gain.
Answer: Thank you so much for reaching out to The EPIC Foundation! First of all, let me validate how frustrating this all must be! When our bodies betray us, it can be devastating! Even more traumatic are the experiences we have with not finding answers and how long things can seem to drag out at times. Unfortunately, the average time for diagnosis of Cushing’s is about 5-10 years. Additionally, Cyclical Cushing’s is considered an even more rare form of Cushing’s. In any case, it is vitally important to seek help from an expert who is well versed in Cushing’s. Medical doctors are told during their training that they will probably never see a case of Cushing’s during their medical professions. I have fought for years to contribute to increasing awareness of this illness that very little is known about even in the medical community.
Cushing’s is caused by excess Cortisol in the body. The source of the excess Cortisol can vary from case to case. However, the first step is figuring out if the body is producing too much Cortisol to begin with. 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. This is not the case for Cyclical Cushing’s patients. There is a myth that Cyclical Cushing’s does not exist but this is not true. Cyclical Cushing’s must be tested for adequately. Adequate and appropriate testing requires multiple test measures over an extended period of time.
One thing is for sure! YOU know your body best! I encourage you to keep seeking answers until you find an answer that makes sense to you. It sounds like you have attempted to comply with treatment for hypothyroidism, however you still don’t feel well. In patients with Cyclical Cushing’s, Cortisol levels can range from high to seemingly normal or even low levels of Cortisol. Again, it is important to test adequately to determine your particular Cortisol pattern in your body.
I have written an article on Cyclical Cushing’s that I think you will find helpful. Please review this article and let me know if you have any further questions.
The article can be found here: http://www.epictogether.org/debunking-the-myth-about-cyclical-cushings/
Please let me know if you have any questions after you have read this article and I am more than happy to answer them.
Please note that I am not a medical doctor. This answer is not meant to replace medical advice. Please seek the help of a medical doctor who is an expert and who can further assist you.
In the meanwhile, The EPIC Foundation is here to support you during this time!
February 2018 – Cushing’s Documentary
Question: Hi Doc Karen. I read somewhere that you are helping to produce a documentary on Cushing’s. Are you still doing the film? When is it coming out?
Answer: Hello! Thank you for your interest in our project! We are so excited about this project, as it is near and dear to my heart!
Here is more information about this project: Battleground Diagnosis: The War to Survive Cushing’s Disease/Syndrome directed by filmmaker, Marc Harris, is a documentary feature length film that shares the stories of the survivors of a rare illness, Cushing’s Syndrome/Disease.
Marc Harris is the cousin of Karen Thames, Cushing’s survivor. He witnessed Karen go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as she tried for many years to get answers from professionals. As she continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; Karen continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching a Cushing’s episode of Mystery Diagnosis, Karen found her answer! Ultimately, she sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. Karen had brain surgery in Seattle on November 16th, 2011. After a recurrence of Cushing’s, Karen had a Bilateral Adrenalectomy (BLA) in Wisconsin on August 21st, 2013.
After having a discussion with Marc in which Karen described that she knew hundreds of others who also had been through long journeys with Cushing’s, the diagnostic and treatment process; In November, 2012, Marc and Karen decided to document these stories. Since that decision, Marc has traveled all over the country to interview Cushing’s patients who are all known to Karen. They all share their stories of struggle, pain, and triumph in the hopes that they can help the world to understand this rare disease.
Marc has interviewed experts including Endocrinologists with expertise in Cushing’s, neurosurgeons, BLA surgeons, and mental health experts.
Some people have asked why the film has not come out yet. This is a very great question! There is a lot that goes into making a documentary. There are many things that impact the length of time it takes to complete the project including funding, participant availability, filming schedule, etc. Most importantly, it is very important to us that we do a thorough job in accurately conveying the stories of these brave warriors while also following the journey of Dr. Karen. Our hope is to contribute to increased awareness which will help save lives!
Additionally, the average time it takes to complete a documentary is 8-10 years. Yes, 8-10 years!
Our goal is to complete this film by Cushing’s awareness month, which is April in the year 2021! This will be within the common timeframe that it takes to complete a documentary. Because of the extensive footage that we have obtained, we plan to create a docu series so that we can share as much as we can!
Please like us on Facebook at http://www.facebook.com/Hug.A.Cushie
If you have any further questions, you can reach Dr. Karen via e mail at firstname.lastname@example.org
Remember, Together, WE are EPIC! #EPICTogether #HugACushie
December 2017 – Corticosteroid dosage after Cushing’s surgery
Question: One year ago, I removed the left gland to treat Cushing’s, however I still take 7.5 mg of prednisone. The Cushing’s did not develop in my excessive weight, however from the operation I have uploaded 8 kg. Every time I try to lower the dose of corticosteroids, I feel very bad. I developed cholesterol and high triglycerides as well as hypothyroidism. Can I lower the dose that is affecting me so much?
Answer: I want to encourage you to still be very cautious during your weaning process from steroids. Many of us try to rush the process because we are fearful of things like continual weight gain and other issues. However, it does sound like you feel even worse every time you try to wean. So, be careful with that.
Here is my feedback:
1. Your body has been through so much with Cushing’s. Unfortunately, it is a myth that everyone suddenly drops weight after surgery and goes back to “normal” right away. As your body adjusts while still giving it steroids, the body is trying to figure out what state it is actually in. These issues will start to resolve over time.
2. Some people who have had one adrenal gland removed eventually need the other adrenal gland to be removed as well. If, in fact, your other adrenal gland does need to be removed, your body would still be acting like it is in a Cushingnoid state. The best way to figure this out is to ask your doctor for testing to assess Cortisol levels.
3. Your body may respond better to a different KIND of steroid. It may be the case that you need a switch to another steroid such as Hydrocortisone. Being on the right kind of steroid can also help with a more effective weaning process. Changing steroids can offer you the opportunity to see if your body has a positive response to a different steroid.
4. The following hormones need to be managed effectively post-surgery:
A. Cortisol- Regular Cortisol levels should be checked to assess for excess Cortisol or even signs of low Cortisol.
B. Growth Hormone- low Growth Hormone (GH) can cause symptoms that mirror Cushing’s such as anxiety and/or depression, decreased libido, decrease in muscle mass and strength, poor concentration and memory problems, fatigue, weight gain, and even lack of motivation.
- A Growth Hormone Stimulation test is needed for this. This is when an initial blood sample is taken through an IV. You are then given a Growth hormone stimulant. Then, your blood is taken at regular intervals, usually lasting about 3 hours. It is then assessed for Growth Hormone (GH) deficiency.
2. Once you are being treated with Growth Hormone, then a simple blood draw called an IGF-1 is taken at least once a year to assess if you are on the right amount of growth hormone replacement. The doctors usually like to see us in the upper normal range to ensure a higher quality of life.
C. Thyroid levels:
- Free T3 (total triiodothyronine)
- Free T4 (Free thyroxine)
D. ACTH-Adrenocorticotropic Hormone- Used to assess pituitary functioning
E. Female Hormones:
4. LH (luteinizing hormone)
5. FSH- follicle-stimulating hormone
F. Aldosterone- Aldosterone helps regulate sodium and potassium levels in the body. Aldosterone is replaced with the medication Fludrocortisone.
G. Ferritin- measures the amount of stored iron in your body. Iron levels can be impacted by this whole process so it is important to check regularly
H. Vitamin D
I. Electrolytes- The two electrolytes most commonly checked include Sodium and Potassium. Levels that are too low or too high can be problematic and even can be life threatening.
5. Finally, I was introduced to a workout that is safe for our population. It is called T-Tapp and was created by a woman named Teresa Tapp. Teresa created a 15 minute, no impact, workout that targets 5-6 muscle groups at one time.
T-Tapp is an affiliate of The EPIC Foundation. Teresa Tapp cares about the chronic illness community, including the Cushing’s and Addison’s communities!
You can find out more about this workout on our website here:
One more thing: I want to encourage you to give yourself the time and space to heal. You literally fought for your life and you are still here! You are a true warrior!
Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.
November 2017 – Pediatric Cushing’s
Question: Doc Karen, I have a teenage daughter who is 15 years old. Ever since she was 12 years old, we noticed weird symptoms. She started gaining a lot of weight, has become angry all of the time, and feels tired all of the time. We tried working out as a family and eating better but nothing is working. She even has a lot of acne on her face. But, we have taken her to many doctors and no one is helping us. I read about Cushing’s in children and I believe this is our answer. The doctors are all giving us a hard time and they all say that “it is just adolescent hormones” and nothing else. They don’t believe that children can have Cushing’s. Please answer the question, does Pediatric Cushing’s exist?
Anonymous, South Carolina
Answer: First of all, thank you for reaching out. I can only imagine how devastating it is to see your child suffer and feel helpless in providing help! You, as her parent, are doing everything you can to get her the help she needs to no avail. I encourage you to keep fighting. There is a term that we use to describe mothers who fight for their Cushie children. We call them “Cushie Warrior Mommas”. YOU are also a warrior! Keep fighting!
To answer your question, it is a myth that pediatric Cushing’s does not exist. Pediatric Cushing’s does, in fact, exist and it is real.
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:
*Your child eats well balanced meals but continues to gain weight that seems unexpected and out of control
*Your child is actively involved in dance, sports, or other physical activities but still can’t lose weight and continues to gain weight
*Your child’s physician expresses concerns about stunted growth in the child
*Your child is exhibiting mood swings or angry, anxious, or depressed moods that seem unusual or uncharacteristic
*You know that your child doesn’t “just eat” and the eating habits of your child doesn’t warrant the amount of weight gained
*Along with the weight gain, your child seems to have random infections or other ailments that seem strange and cannot be explained
Donna Sellers is the Founder and President of John’s Foundation for Cushing’s Awareness, an affiliate of The EPIC Foundation. It is 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.
I encourage you to also reach out to her, as she has a wealth of information about Pediatric and Adolescent Cushing’s Syndrome.
We, at The EPIC Foundation, are dedicated to combatting myths and increasing awareness. You can find more facts about Cushing’s at http://www.epictogether.org/myths/
May 2017 – Exercise after treatment for Cushing’s
Dear Dr. Karen. I am a survivor of Cushing’s Disease. It caused me to gain over 80 pounds and have diabetes, high cholesterol, high blood pressure, and weakness in my arms and legs. I have had both brain surgery to remove the tumor from my pituitary and also a Bilateral Adrenalectomy to remove my adrenal glands. In remission from Cushing’s Disease, I have a lot of damage, still, to my body from many years of being sick. I cannot do strenuous exercise. I want to lose weight and get closer to my pre-Cushing’s body, get my blood sugars under control, and be strong again. I have heard you talk about T-Tapp. Do you tap on your body while working out? And what work outs can I do?
Dr. Karen’s Answer:
Thank you so much for reaching out! I, myself, am a Cushing’s Disease survivor and have experienced many of the things you describe. I gained a total of 150 pounds, developed diabetes, high blood pressure, and high cholesterol. My body was so weak that I used a walker and a cane. So, I totally understand.
First of all, congratulations on surviving Cushing’s! You made it! I understand that there is residual damage and I am sorry for that. But, I also want to acknowledge that you are a WARRIOR!
Let me start by saying that T-Tapp is in no way affiliated with tapping the body. You might be thinking of EFT or Emotional Freedom Techniques. This is when you tap certain areas of your body to create improvements in certain areas of your life. This is not what I am talking about when I promote the use of T-Tapp.
The creator of T-Tapp is Teresa Tapp. Teresa was inspired to create this workout to help others who have trouble doing conventional workouts. She has such compassion towards the chronic illness community! She has helped millions of people who have had illness and injuries to get their lives back! I was introduced to T-Tapp by my friend and fellow Cushing’s warrior. At the time, I was skeptical because nothing else had worked. However, T-Tapp literally changed my life!
I first started out with a workout called MORE Rehab. This workout was a slower pace and helped me to build back muscle strength. I love the fact that the people who are working out in the video look like “regular” people and they are trying to get their lives back just like I was. MORE is geared towards individuals who have more inches to lose on their bodies and also have health issues that they would like to target and resolve.
Once I “graduated” from the MORE Rehab, I went on to one of my favorite workouts. This is the workout that I recommend to people in the Cushing’s community who are in remission. This workout is called Basic Workout Plus. The thing I love about this workout is that it is only 15 minutes! I knew from the beginning that this was doable. Once I started actually doing the workout, my previous notion of “no pain, no gain” went out the window! I realized that I could do a reasonable work out and get results without killing myself.
As you know, overexerting ourselves, physically, can lead to an adrenal crisis. So, doing the above workout has proven to be both safe and effective. These workouts are considered “no impact”, which means that there is no jumping around or that intense cardio that you might associate with exercise. Did you know that over exercising can actually make you GAIN weight?!!! Teresa Tapp developed a signature stance that helps to activate about 6 muscle groups at one time and put you into fat burning mode within a few minutes!
All of the workouts have an instructional video on the DVD. You start with the instructional so you can learn the moves and form. Then you move on to the actual workout. Learn the Hoe Downs. I now do 2 sets of Hoe Downs after every meal. My A1C has gone from 10.4 to 5.5! I no longer have high cholesterol or blood pressure. Additionally, I do not need a walker or cane to walk and am even dancing!
Here are the links to some things you can look into:
Basic Workout Plus DVD: http://www.ttapp.com/affiliate/idevaffiliate.php?id=621&url=2993
Dry Skin Brush: http://www.ttapp.com/affiliate/idevaffiliate.php?id=621&url=2999
Book “Fit and Fabulous in 15 Minutes”: http://www.ttapp.com/affiliate/idevaffiliate.php?id=621&url=2997
Please e mail me again at: email@example.com if you have any questions about this information.
April 2017 – Treatment protocol for patients who are cyclical but still struggling to find the Source
Dear Dr. Karen,
I wonder if I may have your advice please.
I am a 39 year old female, have finally been diagnosed with cyclical Cushing’s. Showing cycles in a 30 day salivary test. I cycle every few days with peaks lasting around three days. Sometimes, I will have a very high peak. I also show high cortisol in urine, and variable ACTH. My pituitary MRI came back normal, so they will now test my adrenals. I am in the UK and the US seems to lead the way with treatment, are there any drug protocols or treatment options that may help symptoms. I have been testing for a year, probably had Cushing’s near on a decade now, my body is exhausted.
A. E., UK
Dr. Karen’s answer:
First of all, let me say that I am so sorry for what you are facing now. The journey with Cushing’s is not easy at all, as you know. It sounds like you are exhausted and that your body is exhausted! Cushing’s causes so much damage. There is a myth that Cyclical Cushing’s patients have less significant symptoms than Florid Cushing’s patients. This is false. The damage that the Cortisol has done to your body is real and I imagine that you are ready to move forward after over a decade. It sounds like you have already caught your high cycles which is a good thing. This is the first step.
As you probably already know, the person with Cyclical Cushing’s
“cylces” between seemingly normal or low Cortisol levels and high enough cortisol levels to cause Cushing’s symptoms. Adequate and appropriate testing requires multiple test measures over an extended period of time. Studies have shown that the prevalence of Cushing’s patients who cycle is much higher
than was once thought. There is a myth that just one normal test results warrants the suspension of testing, even when a patient presents with
symptoms of Cushing’s. Experts in the field have found that patients who Cycle are still impacted by their periods of high Cortisol. For this reason,
many people argue that Cyclical Cushing’s is an even more rare form of Cushing’s Syndrome.
With that said, it is also a myth that one should rule out a pituitary source if it is not found on an MRI. Adele, I want you to know that 60% of pituitary tumors in Cushing’s patients are not seen on an MRI. They are usually referred to as micro adenomas and are so small that the imaging does not pick them up in majority of cases. The tumor can also be hidden in some cases, as was the case in my personal situation. A non-expert from a facility that is not a high volume center may not know how to identify these kinds of tumors, easily. It is possible that your Cushing’s comes from an adrenal source. However, before a pituitary source is completely ruled out, there are other ways to assess if your pituitary is the culprit.
Typically, when there is evidence of high ACTH, even if variable, the next step is what we call an IPSS. Like I said, 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. ”
I would discuss this with your medical team as the next step. The IPSS can be an effective way to adequately rule out a pituitary source if you are having high ACTH readings. Not all hospitals have the staff or expertise to perform the IPSS so you may need to do some research on what facilities, locally, are able to move forward with this procedure. Your doctor must refer you for this procedure.
In the meanwhile, there are a number of medical interventions that have been tried to help alleviate the symptoms of Cushing’s. One of the older school medications used is Ketoconazole. This is actually not a first line treatment for Cushing’s. It is primarily used for fungal infections. However, it has been found effective to decrease Cushing’s symptoms. Again, this is not a long term solution, as it has been known to impact liver enzymes.
Two other newer drugs include Korlym and Signifor. They work in different ways and have been used, more experimentally, more recently to block Cortisol and decrease symptoms. There are side effects from both of these medications that may make it difficult to continue long term. More information about pharmaceutical interventions can be found on an article written by our Pharmaceutical expert, Dr. Tanya Warren here: http://www.epictogether.org/medication/
To my knowledge, still today, the most effective way to treat Cushing’s, including Cyclical Cushing’s, is to remove the tumor from whatever source.
I hope I have answered your question adequately. Please know that we are here for you at The EPIC Foundation. The answer to your question will also be posted on the website after the 15th of the month. Thank you for taking the time to ask it, as I know that many people will benefit from getting this information. Please always feel free to contact us at firstname.lastname@example.org
Remember, Together, we are EPIC!