Cushing's Moxie: Fighting The Worst Disease You've Never Heard Of: The Internet Rescues A Family

Saturday, January 7, 2012

The Internet Rescues A Family

I usually stick to Cushing's stories, but this one really tugged at my heart. Online relationships can be real, valuable, substantial, and irreplaceable. I don't even want to think about what would have become of me without the guidance, support, and love from Cushing's patients I've met in the past years. Thank you to all y'all.

		LISA BELKIN: The Internet Rescues A Family
	If you've been tempted to dismiss the internet as superficial and soulless, and online relationships as a poor imitation of real ones, you might want to talk to Serge and Monica Bielanko today.

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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 who guide me and travel with 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. We see it all. We encourage you to do the same. Join the group. We urge you to take an active role in your health care and work closely with medical professionals, but 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 don't have any money 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. I started this blog in 2008, so the broad view posts 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.

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

* Tips to Diagnosis

* Cushing's for the new folks

* Cushies describe Cushing's

* Cushing's patients often need multiple surgeries

* Dear friend Kate in Science of Obesity show

* Listen to 3 interviews with Cushing's expert Dr Friedman

Symptoms of Cushing's

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
Depression, anxiety and irritability
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

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 am now recovering and tapering my steroid/hydrocortisone/Cortef dose.

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.

~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.

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.

Saturday, January 7, 2012

The Internet Rescues A Family

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