Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of: May 17, 2014

Saturday, May 17, 2014

Do you have an emergency shot?

It is of the utmost importance that people with primary adrenal insufficiency [bilateral adrenalectomy(BLAers) and secondary adrenal insufficiency (Cushies after pituitary or adrenal surgery) are prescribed and allowed to carry Solu-Cortef Act-o-vial injections with them at all times.

I recently took a poll among BLAers, and 15 of 80 patients were not given prescriptions for the emergency injections. Many endocrinologists refused to prescribe them and some even were chastised for their silliness in asking.

Be sure your doctor writes the RX for Solu-Cortef ACT-O-VIAL.

I was furious.

This is what you tell your endocrinologist in words an endocrinogist should understand:

**A person with adrenal insufficiency (no adrenal glands, post op Cushies) need a Solu-Cortef emergency injection like a type 1 diabetic needs an glucagon shot. Period. **

For those without the emergency injection, I want you to know that those with it always have it available in the house AND take it with us wherever we go. We carry two needles, Solu cortef actovial medication, crisis letter from our doctor about treatment in the hospital, plus additional info to advise ambulance personnel or even the emergency room staff how to treat adrenal insufficiency.

Ask your nurse and doctor friends if they know where the adrenals are. Then ask them what they do. People don't know. It's sad and shocking but true. Not even the nurses and doctors in the emergency room know what to do in the event of your adrenal insufficiency or crisis. Many in this group of 95 have horror stories about ER hospital staff refusing to give Solu cortef, refusing to read/ disregarding the crisis letters from my doctors. Some refuse to take patients back quickly to check blood pressure, and instead leave them in the waiting room for hours. ER staff thinks you have the flu or a bad stomach but when you vomit uncontrollably, or they label you a drug seeker.

SOLU CORTEF 100 MG IS NOT A CONTROLLED SUBSTANCE!!

There is no reason besides ignorance and stubbornness for them to treat us like that.

The *one* safeguard we have is to save ourselves by keeping the shot with us at all times and ensuring those closest to us can administer that shot to us. Some lose consciousness (synscope) with adrenal insufficiency, while many get very confused, can't communicate, and can't manage to do the shot themselves.

I have not met 95% of you, I know. However, I would be devastated if we lost any of you.

I will tell your family to sue the doctor if you die. Not giving a pre-op Cushie and especially a BLAer an emergency shot is a malpractice suit waiting to happen. Remind the doctors of that.

*******

Friends posted this letter from the National Association for Rare Diseases for care in emergency rooms (link) as well as a letter to doctors who refuse to prescribe the Solu-cortef medication. This can save a person's life.

http://www.nadf.us/downloads/emergency_treatment_english.pdf

Subscribe to: Posts (Atom)

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.