Be the Squeaky Wheel: 4 Tips on How to Be Your Own Health Advocate
Hey there, everyone! It's your friendly personal trainer and athlete Teri! I want to share something with you today and is pretty dang hard for me to talk about, but I feel would be incredibly beneficial to you or anyone else struggling with their health and getting answers.
As some of you know, I compete in bodybuilding. I am usually in terrific shape, not overweight, and look pretty tops. The last year has been a struggle, which is not normal for me. I've lived in my body for 38 years, and I know when something's up.
Something is Up
I have been in a caloric deficit for practically a year, and I gain weight--all while training. I've played with nutrition and different approaches under the guidance of my trainer and a doctor. No change.
I have had some symptoms that have set off warning signs. So, I went in to have things looked at, and my primary care doc asked to have my cortisol tested. So I went to a doc who could order this testing. Why? Unexplained weight gain. Easy to bruise. Hair loss. Loss of female cycle. Frequent urination. Anxiety. Mood swings. Fatigue.
Off I went to a very reputable clinic in the Midwest. I met with an endocrinologist. I told her my symptoms and my struggle. Then I cried in front of her. I told her "I think I have high cortisol, and my symptoms align with Cushings.” (According to UCLA Health, Cushing's disease is a serious condition of an excess of the steroid hormone cortisol in the blood level caused by a pituitary tumor secreting adrenocorticotropic hormone (ACTH). ACTH is a hormone produced by the normal pituitary gland.)
The endocrinologist's response was this. Her theory was that I had a stunted metabolism. Since I had a large weight loss in 2010, (60 lbs) she thought I had burned out my metabolism and ruined my basal metabolic rate (BMR).
The doctor ordered BMR testing and - according to her notes - cortisol testing to "ease my mind.” She was pretty sure that I was eating too much. I told her I was 1100 - 1400 calories (depending on the day) and still gaining weight. That I was not over-consuming. I also told her I have a diploma in nutrition, and that went in one ear and out the other.
On my return visit, I brought my husband with me. The cortisol test result had not come back yet. The BMR was normal. At rest, I burn 1500 calories a day, the target for a woman my age. Again, she insisted I was eating too much. My husband had to stop her and say "This is not a calorie in/out issue. My wife is a competitive athlete and weighs all her food out on a scale.”
It's true, I do. Old habits die hard. Again, I compete. Normal people do not do this unless they are learning portion control. That, and I don't mean to toot my own horn, I'm a beast in the gym. I have a witness to my fitness, as they say. Ask any of the dudes I workout with.
The doctor did not want to see my food journal. She did not want to see my photos that I had at the ready. I have all my information in spreadsheets - because I compete - and I am meticulous in this.
She kept coming back to diet. I wrote down what I eat. For all I know, she did not look at it. The appointment was over, and she said she would review the rest of the test results upon her return.
Guess what? The cortisol in my urine was sky high. My doctor was on vacation while the results came in, but thanks to the patient online portal system, I could see the numbers myself. There were other abnormalities as well, such as the amount of sodium in my urine. Also alarming was the volume of my collection. I asked if another doctor could give me feedback on the results in her absence. I was given an answer that the sodium and the urine amount could throw off the cortisol results, and to wait until my doctor returned.
Jon and I were concerned about my results. So, my husband and I went and had tests ordered at another hospital. Blood cortisol came double the normal end of high. One of three saliva came back double the normal high as well.
My endo returns. She calls me. She says "I don't believe you truly have high cortisol, but I will run a suppression test to be sure. I don't appreciate you consulting with other doctors about your case."
WHOA! HOLD THE PHONE!!! WHAT?!?!
So, we all know we are entitled to second opinions. Her response was a warning sign. If you ever hear this, I recommend you get another doctor or someone professional to help you with what you are going through.
Since she was ordering testing, we went through with it. We redid baselines and urine cortisol was high again. Blood was normal. Odd, but not unheard of. Then I was put on a steroid to see if my cortisol levels would decrease. They did!
Some docs would then say there is no issue after that. That this is a normal response. However, we continued with CRH testing. This is where you are given a form or cortisol via IV and then tested every 15 minutes on how your cortisol and ACTH levels respond. Before the test - they take 2 baseline readings. If you jump above or below certain percentage values during the test, it can indicate where the excess cortisol levels are coming from.
I met those jumps, and then some: 22% in cortisol (they look for 20% or higher) and 57% in ACTH (they look for 35% or higher). After my simple math calculations, I thought for sure I was going to get the diagnosis of Cushing's disease of the pituitary.
I did not. I got "pseudo-Cushing's.” The justification being that I had suppressed on the dexamethasone testing and that it wasn't a higher jump during the CRH testing. I was told again to eat 1200 -1500 calories a day, restrict my water intake to 64 ounces only and limit sodium. I was left with that.
Can you hear my level of frustration? Words cannot describe.
Pseudo Cushing's occurs under the following conditions:
Severe stressful incidents
Yes, I have has some major stress in the last year. But, I am not buying this. It's not like I'm hitting the bottle either since alcohol ruins progress in the gym. So, I am getting a second opinion, I am pushing for an MRI, and I am so deep in research it's ridiculous. Having been a journalist, research and going "deep space nine" on topics is my forte. Knowledge is power.
I have another doctor friend in another country that I have been consulting with who is a top-notch endo. He has insisted I get an exam. This past week, we went back to my primary and updated him while being seen for something else, and he is seeing what can be done. I also took my husband to that appointment as well.
Be Your Own Health Advocate
Okay, here's the big thing. Be the squeaky wheel. Yes, doctors have extensive training, but they do not live in your body. YOU live in YOUR BODY. You know your body. I've been in mine for 38 years. That trumps medical school in a lot of ways. There's a reason for the saying "trust your gut.” There's also a reason for the saying "practicing medicine.”
Remember These 4 Things:
1. Listen to your body.
2. Write down your symptoms.
3. Find the right doctor, one who listens.
4. If you are not comfortable with your current doctor or if your instinct tells you that something isn't right about your diagnosis, get 2nd opinion.
I took to Facebook, and asked some friends about times they had to be their own health advocate. Here are some of the comments I have permission to share:
From Catt - a friend struggling with an eating disorder:
"This was more of an acute medical situation I was in. I had severe back pain and a fever and went into an emergency room and the doctor dismissed me as being anorexic with the flu. (He said my severe back pain was from being emaciated). He then berated me for wasting his time when all I needed was nutrition and a Tylenol.
I did not stand up for myself and demand additional tests. I just told him to screw himself and took myself to another hospital and told a doctor in the ER what the other doctor said. He didn't think that was appropriate of him. He did a lot of tests and an X-ray that didn't conclude too much. But he didn't stop at that. He was going to get to the bottom of things so he did a CT and voila--PNEUMONIA in the lower lobes!! Had I not went to our small local hospital, I may not be writing this. Since then I've learned it’s ok to get second, third, fourth whatever opinions. If you don't feel right, don't stop ‘til you do."
Just because Catt is working through her anorexia does not mean a health professional should dismiss other conditions or symptoms.
"I had to be my own advocate 5 years ago. I had fractured my shoulder in an accident. The local hospital refused to give me an MRI. For three months, I was in severe pain and my physical therapist didn't see any improvement in my movement. I just had a gut feeling that something was wrong. I got a referral to another hospital and they ordered an MRI immediately. That's when I found out that I had 3 fractures in my shoulders. We then had to switch my physical therapy training to go at a smaller pace. So glad I trusted my gut and became my own advocate."
"I have had to be my own advocate for 12 1/2 years with my atypical autoimmune hepatitis. The book How to be a Smart Patient helped me a lot. My husband Ken attends appointments with me every time I go to validate my symptoms and concerns. I have gone from 33 pills a day to 11 and now they are considering taking off the next major medication, which I will find out about in October."
"After nearly two decades of struggling with my health, being misdiagnosed, and overmedicated, I reversed 10 chronic conditions and lost 92 pounds. I accomplished this by using chiropractic care, acupuncture, meditation, organic whole foods, nutraceuticals, and dōTERRA Essential Oils. This transformational period in my life drove me to intimately understand that the “Power that made the body heals the body” – BJ Palmer. It is my life’s mission to share my experiences and knowledge to help others on their own health journey so that they too can make informed choices about their well-being. I authored my story “Informed Choices” in the book “Overcoming Mediocrity”.
Today I educate others on the power of these lifestyle choices. I don't remember how many doctors it took but I new this..... I knew that this was not how my life was going to end. That the definition of insanity was doing the same thing and expecting a different result. So, I listened to my higher self. If what a doctor told me did not seem right, I learned to ask the hard questions and listen to my body and not be in a rush to let someone perform surgery. I think I knew deep down that food was my medicine."
My friends, be the squeaky wheel. Be a pain in the rear if you need to be. Call people out on things when they need to be. Do what’s best for you. Arm yourself with information, not just random Google searches. Find legit medical studies and journals. Be your own health advocate.
If you would like more information on Cushing's Disease, check out UCLA Health.
Teri Tenseth Market is a Personal Trainer and holds a diploma in nutrition. She is also a competitive natural bodybuilder with the NANBF and competitive power lifter with the USAPL. You can find her on Instagram, Facebook, and Twitter at @fcpchick.