Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of: Day 2: Good News + How Many Doctors does a Cushie require?!

Tuesday, April 11, 2017

Day 2: Good News + How Many Doctors does a Cushie require?!

Hello all. I'm on Day 2 of the Cushing's Awareness Challenge for Bloggers. As you can see, it is now April 11th. I believe I stated before that I will make 30 posts in April, not that they would be done daily. :) I hope you will forgive me.

If you are a Cushing's patient or "Cushie," you will not be surprised that my blogging is off scheduled from ... well, multiple causes:

Cushing's
Addison's
high cortisol
low cortisol
brain fog
anxiety
procrastination
facebook
email
text
performance pressure
the words "deadline"
"done today"
"everyone is waiting on me"
"but I made a promise"
"I will disappoint everyone"
"I have so much to do"
+ any other symptom(s) that decide(s) to STAND UP and BE HEARD that day.

and other delays from being a patient with chronic illness:

calling the insurance for preauthorization on procedures, surgeries, imaging, growth hormone injections
calling the insurance for review of benefits
calling the insurance for error in claim(s)
calling the insurance for prescription pricing and coverage
calling the insurance for specialty injection for adult growth hormone deficiency
MyCharting/calling the doctor(s) for appointments, questions, requests, refills
checking MyChart for appointments, lab results, and imaging reports
studying every word in the lab results and imaging reports

So, it is this last one that I decided to focus on today.

Regular readers (some o' y'all tell me it's true!) know that I advocate for patients to self-advocate as well as to promote cortisol imbalance awareness (Cushing's, Addison's, Adrenal Insufficiency).

I want to share one way I do decipher imaging reports with online medical dictionaries, such as merriam-webster.com/medical, online-medical-dictionary, drugs.com/medical_dictionary. Anyone who has searched the internet knows how to enter keywords. Then what?

This is happening to me today, and I had to stop and share it.

I am reading the report from x-rays I had of my hips from mid March, just about a month ago. These images were taken 20 minutes before my appointment with a orthopedic specialist/ surgeon. I met the doctor, and he said he sees some inflammation in my pelvis but the medicine I take for rheumatoid arthritis will also help the inflammation in the hips and low back. WHOA! That's good news. I don't often get good news. I mean, actual "that pain will go away," "that tumor is history," or "these lab results explain your complete symptomology!" Uh uh.

I hear more of "I'll write a referral/ send your case to the ...

sleep medicine for sleep apnea due to weight
rheumatology
physical therapy
dermatology
mineral endocrinology (I know, right?! that's another post)
allergy and asthma
ophthalmology for cornea (contacts for keratoconus) and retina annual exams for RA med (more later)
sleep apnea
ob/gyn
advanced ob/gyn ("for female hormone stuff)
nutritionist (August 2017)
orthopedic hip speciality
pain specialist
pain clinic with TWO doctors (physical therapist, psychiatrist = summer 2017)

That's 12 doctors I've seen since I started as a patient as UTSW in Dallas and three I'll add by the end of summer. 15 doctors!

Did you notice anyone missing?!

I also rely on my PCP and endocrinologist as a team for my medical health.

I see a chiropractor regularly to work out back pain.

I cling to my psychiatrist and psychologist for my mental and "behavioral" health. All are wonderful and *actually remember* what I told them last time. Novel concept for a doc these days and a total plus, right?!

So add 4 more doctors. That's 16 doctors now plus 3 by the end of summer. That's 19 doctors! I CAN'T WRAP MY HEAD AROUND THAT. Yet, this is the reality that many Cushies find themselves in.

Let's remember, folks. I am in remission.

My first pituitary surgery was June 18, 2009.
My second pituitary surgery was April 20, 2011.
My BLA was December 31, 2013.

I am more than three years post op BLA, and I still need all those doctors to find treatment and comfort for all that lingers after cortisol excess damaged my body.

Cushing's is not joke. It doesn't mess around.

Will this all happen to you? Will you need this much help this long after treatment? I don't know. No one knows, not even the doctors who tell you that "you are cured, stop worrying." Cushies know better than to use the word "cure." We say remission, and still fear the day that high cortisol symptoms decide to say "Hello. I'm back."

Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

M o x i e_F a v o r i t e s :

* Moxie's Tips to Diagnosis

* Initial Work up for Cushing's

* Comprehensive symptoms list

* Can your cooking pots be the cause of Cushing's?

* Cushing's for the new folks

* Cushing's patients often need multiple surgeries

* What People Need to Know about Cushing's Awareness Month

* Cushing's symptom list, dates, pain scale

* PNA's Pituitary Patients' Bill of Rights

* Cushies describe Cushing's

* Listen to 3 call-in talk shows with Cushing's expert Dr. Friedman

* Listen to Dr. Friedman's 4th call-in show about medical therapies

Symptoms of Cushing's

**You can have Cushing's even if you don't have all of these symptoms**
Anxiety
Irritability
Extreme mood swings and rage, gets confused with bi-polar
Medication-resistant depression
Sensitivity to loud sounds and light
Absent sex drive
Facial redness
Rounding of the face (moon face)
Unexplained weight gain around belly
Buffalo hump, or hump on back of neck
Pink or purple stretch marks
Thicker or more visible body and facial hair
Acne
Muscle weakness
Extreme fatigue
Thin and fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Bone thinning
Recurrent infections
Sleep disturbances, night sweats, awake at midnight or 4 am
High blood pressure
Diabetes mellitus
Irregular or absent menstrual periods in females

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.
1) Do 24 hour UFCs with 17-OHS.
2) Get cortisol blood draws at midnight and again 30 minutes later.
3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?
Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

What Doctors Will Claim You Have Instead of Cushing's:

Obesity (lose weight, lose symptoms)
Polycystic ovarian syndrome (PCOS)
Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
Back and muscle pain
Diabetes
Blurred vision, visual field loss, double vision
Chronic fatigue syndrome
Dry, oily, or sweaty skin
Impotence or infertility
Joint pain, joint/bone abnormalities
Migraines
Muscle weakness, carpal tunnel syndrome
Temporomandibular joint/TMJ/jaw joint pain
Thyroid imbalance or "slow metabolism"

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.
We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.
This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.
DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.
Endocrine:: Thyroid problems and diabetes (many have this, caused by Cushing's)
Orthopedics :: joint pain, joint/bone abnormalities, Plain ol' back and muscle pain (caused by Cushing's)
Dermatology :: dry, oily, diaphoretic skin
Ophthalmology :: blurred vision, visual field loss, diplopia
Neurology :: headache, proximal muscle weakness, carpal tunnel syndrome
Urology :: impotence, hypogonadism
Obstetrics and Gynecology :: galactorrhea, menstrual irregularities, infertility, hirsutism, polycystic ovarian syndrome (PCOS)
Fibromyalgia (no lab tests can prove this, given when they don't know what else is wrong with you)
Don't bounce around. See an endocrinologist. Show them you are an informed patient. Don't let them turn you away to suffer.Get yourself help. Demand it, if you must. Don't give up.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.