Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of

“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity

Tuesday, May 29, 2012

Our Friend Sherry Shares her Cushing's Story





Cushing’s powerpoint
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Posted by Moxie Melissa
Labels: Cushie bios, Cushing's awareness
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WHEN CUSHIES DON'T KNOW WHERE TO TURN,

WHEN CUSHIES DON'T KNOW WHERE TO TURN,
WE RUN TO OTHER CUSHIES.

mox·ie /ˈmɒksi/

–noun Slang.
1. The ability to face difficulty with spirit and courage.
2. Vigor; verve; pep.
3. Courage and aggressiveness; initiative; nerve.
4. Skill; know-how.

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Discovery Health's Mystery Diagnosis

When illness strikes, we look to doctors for answers. What if they can't help? For these unlucky patients, diagnosis is a mystery.

Old and New Me

Old and New Me
In 2014, i'm reversing my cortisol in search of my old self

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.

In Memorium: Those We Lost to Cushing's (hyperlinks take you to obituaries)

  • My dear, lovely friend Kate Myers, 44 (6/24/14)
  • In Memorium: Cushings-help.com
  • EPIC Foundation Legacies page
  • Tim Fulkerson, 42 (7/5/2018)
  • Kaylyn Allen (2017)
  • Casey Dailey, 38 (8/29/17)
  • Missy Young (1/29/17)
  • Malia Kenney (1/4/17)
  • Melinda Smith (5/11/15)
  • Alena Renea Weeks Greenhill
  • Bonnie Hamm, Australia
  • Diane
  • Hermina Dala
  • Janet Whitehead Mitchell
  • Jason Gray
  • Jonel Watson (12/24/2013)
  • Jill's father
  • Kandy Klein
  • Kym Grupido
  • Lenise
  • Liz Raftery
  • Lori Holt
  • Marie Richardson
  • Martha
  • Millie Niss
  • Sarah Thomas, 30 (11/2013)
  • Natalie Fay
  • Sue Gifford
  • Worst Case Scenario

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

My Dear Friend Kate with Dr Friedman, our doctor

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

Click on the belly for more symptoms.

Click on the belly for more symptoms.

Long-Term Complications of Cushing's

  • Bone loss (osteoporosis)
  • High blood pressure (hypertension)
  • Kidney stones
  • Diabetes
  • Unusual infections (boils, etc)

Cushing's in the News

See Lori's story on Dr. Oz

My Friend Lori's Beats Cushing's after 5 Brain Surgeries

Causes of Cushing's

  • 70% cases are pituitary tumors (benign)
  • 20% cases are adrenal tumors (benign)
  • 10% cases are ectopic tumors (malignant)

Looking for something? (under construction)

  • Cushing's awareness (31)
  • awareness (17)
  • daily life (11)
  • depression (9)
  • patients know best (7)
  • celebrity patients (5)
  • Cushie community (4)
  • damage (4)
  • patient stories (4)
  • after surgery (2)

~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.

Looking for inspiration: Today is your Day

Shania Twain - Today Is Your Day.

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Helpful Links

  • Cushing's Help
  • Cushing's Support and Research Foundation
  • Hormone Foundation
  • Lab Tests Online
  • National Adrenal Disease Foundation
  • Neurosurgical Focus: free medical journal articles
  • Pituitary Network Association

Cushing's Awareness Challenge

Cushing's Awareness Challenge
Click to see the Cushie Bloggers who will post every day!

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"

Spreading Awareness to the Health Community

Spreading Awareness to the Health Community
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.

If followers is greater than 1, then my time is well spent.

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        • Our Friend Sherry Shares her Cushing's Story
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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.
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