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."

Gambling on a Cushing's Diagnosis: What are the Odds?

A Cushing’s friend of mine recently asked what we can say to our doctors to explain why we think we have Cushing’s. The Cushing’s community knows that the burden of proof falls on our shoulders to prove we have Cushing’s to a doctor, before tests are run and even after positive tests confirm it.  These doctors play judge and we Cushing’s patients must prove beyond a reasonable doubt that we have Cushing’s, often in the hostile setting of doctor’s office after doctor’s office. Seems harsh? Seems unfair?

Doctors are taught in medical school that they are unlikely to see a case of Cushing’s in their entire medical careers.  In fact, doctors admit that Cushing's may be the most difficult diagnosis to make in all of medicine. Sigh. So we walk in, prepared as our Cushie friends have recommended and armed with symptoms list, photo summary, and past lab results. Doctors are still incredibly dismissive and cruel. They blame the patient for their weight gain, regardless of exercise or dietary habits. They routinely dismiss all points the patient makes.  Many doctors eagerly counter every point and spout facts that are incorrect according to published medical literature.

So what are we supposed to do? Give up? No. We keep fighting no matter what.

To that end, I wanted to share the argument I have used for a long time on several occasions. In fact, I just used this during my appointment with a new neurosurgeon this past Friday.

*******

In statistics, we learn the concept of probability. Probability is the chance that something will happen - how likely it is that some event will happen.  With each variable added, we decrease the probability that each one of those things can occur together at the same time. 

Think of the elusive, rare Cushing's diagnosis as a slot machine with 7 wheels. Each wheel is labeled with nice fruit images and contains one of the following: 

·       all Cushing's symptoms

·       high urine cortisol

·       high midnight cortisol serum

·       high saliva cortisol

·       high ACTH

·       positive IPSS

·       MRI showing pituitary tumor

Now spin the wheel.  For a Cushing’s diagnosis, each wheel must land on the diagnostic criteria for Cushing’s listed above.

What is the likelihood that all of those things are going to "hit" and line up for the jackpot?

It is not probable. In fact, the odds are stacked against you to have all those things line up like they do. For us Cushing's patients, THEY DO LINE UP. WE DO HAVE ALL THOSE THINGS CONFIRMING CUSHING'S. It is a RARE occurrence, and it doesn't happen often, but people do spin the wheels on a slot machine and line up all the wheels to win. For us, of course, Cushing's is a HUGE loss -- no win at all.

Now, let’s take a gander at what the diagnosing slot machine would have to look like for me to get my Cushing’s diagnosis, since my doctors require multiple high test results in each of the testing categories.

To confirm my Cushing's diagnosis, it would take
28 slot machines with 5 wheels and all 140 wheels
landing on Cushing's. Guess what? They did. Lucky me.

·       many Cushing's symptoms (75 wheels for each of my Cushing's symptoms)

·       high urine cortisol (25 wheels for each test)

·       high midnight cortisol serum (25 wheels for each test)

·       high saliva cortisol (7 wheels for each test)

·       high ACTH (4 wheels for each test)

·       positive IPSS (1 wheel)

·       multiple MRIs showing pituitary tumor (3 wheels)

Now then, based on my lab values in each category, for my diagnosis, we have built a slot machine with 140 wheels. Think of how much space this would take up in a Vegas casino!). 

So, let’s imagine me going up to have a seat. 

I pull the arm.

I spin the wheel.

One by one, each wheel lands on the picture showing CUSHING’S.

My Cushing’s diagnosis is confirmed. It is rare, but it is not impossible. Yet, doctors still argue and berate the patient.  You can see why I have very little tolerance for someone who calls my diagnosis, or any Cushie’s diagnosis, into question. It is ludicrous, unfathomable, and unconscionable for any medical professional to doubt us, due to their ignorance, pre-conceived notions, lack of medical curiosity, or their tight schedule that prevents them from listening to us and really understanding our whole history. The way doctors treat Cushing’s patients should be illegal.

My first neurosurgeon told me that in medical school, doctors are taught to find the one disease that explains everything and to not accept many "little" diagnoses strung together. It was imperative to find the diagnosis that captures as many of the symptoms as possible.  I implore the medical community to remember that lesson and do more to help their patients.

There is no doubt why we Cushing’s patients are the determined lot we are. We know our own bodies. It is our unrelenting pursuit for the truth, our unwillingness to give up on ourselves, and our ability to learn about our disease from those who face its challenges every day that enable us to fit all the puzzle-piece-diagnoses together in search for our cure. 

That's why I look at *all* of my friends as Cushie warriors.

"Pituitary Disorders, the Often Missed Diagnosis"

"Pituitary Disorder:  the Often Missed Diagnosis"

Dr. Lewis Blevins is the medical director of the California Center for Pituitary Disorders at UCSF Medical Center.  In this interview, he discusses the trickiest gland in the body.  The transcript and audio are posted on their patient education page.

"It is Literally Impossible for You to Have Cushing's"

As much as these patient-made videos cause me to cheer, I am quickly infuriated at how endocrinologists get away with dismissing patients who come to them for help.  I have had many of these types of appointments. Even though I calmly fight and stand my ground, like the female patient in this video, I continue to get dismissed... even with my surgical history and past test results.  It is frankly disgusting.

Day 29: Dr Friedman's Everything Guide to Thyroid

The Everything Guide to Thyroid Disease: 

From potential causes to treatment options, all you need to know to manage your condition and improve your life

Theodore C. Friedman MD PhD (Author), Winnie Yu Scherer (Author)

Purchase it on Amazon.com for only $11.

* ~ * ~ * ~ * ~ *

I am a patient of Dr. Theodore Friedman in Los Angeles, California, but like many, I traveled to see him when I lived in Texas.  Dr Friedman is a Cushing's expert and specializes in difficult-to-diagnose cases of the pituitary, adrenals and the entire endocrine system.  Dr Friedman sees five to ten patients with Cushing's each week and has for many years.
Doesn't make it sound that rare, now, does it?

If you are also interested in understanding the ins and outs of the thyroid glands -- overactive (hyperthyroidism), underactive (hypothyroidism), or self-attacking (Hashimoto's) -- I encourage to take a peak at this book.  It may be just what my doctor ordered.

If you would like more information about Dr. Friedman and his practice, read this excerpt from his website, GoodHormoneHealth.com:

So many of us believe that fatigue, weight gain, loss of libido and other problems are just symptoms we must learn to live with.  What if these symptoms are not the result of stress, diet, or aging, but are actually caused by a hormonal disorder?  Symptoms of hormone deficiency or excess may be subtle and difficult to diagnose.  Many hormonal problems are misdiagnosed as depression, especially in women.  


You know your own body better than anyone else, and you know when something is wrong.  Dr. Friedman is a compassionate, caring physician who will listen carefully to your concerns and work with you to establish a treatment plan.  As an experienced, board-certified endocrinologist and researcher, he has the capabilities to diagnose and treat even the most difficult hormonal problems.  Dr. Friedman has found that some of his patients suffer from undiagnosed pituitary or adrenal problems. These include many people suffering from Cushing's disease, which can present a baffling array of symptoms and is frequently misdiagnosed. Other patients may have pituitary or adrenal insufficiency, which has numerous symptoms and is equally hard to diagnose. Dr. Friedman is a world expert in these difficult-to-diagnose diseases and he welcomes inquiries from patients and their physicians.

Day 25: Another look at Cushing's

For those of you on Facebook, you may recall these Subject Slides going around.  The "What ___ say" part was always the same.  I saw some about Kansas, teachers, military intelligence, and everything else in between.  This is the one I created for Cushing's disease. I consider this one the "nice" one, as friends and family usually say things much more damaging, and doctors are in equal measures just as dismissive and heartless to the patient sitting in front of them.

HERSTORY: Seeing Yourself in a New Way

From the bitterness of disease, man learns the sweetness of health.
       - Catalan Proverb 

I am preparing a new patient packet for my new endocrinologist.  She is located only 2 miles away, and she has been vetted by three other Cushies in the area.  So, I sit here at 3 am gathering my photos, lab results, letters, imaging reports. I decided to rework my photo summary.

I always find the process of summarizing my life in photos very discombobulating.  I see images of myself, and I wonder where that person went.  It makes me very sad.  I see the weight pile on, especially during the 2000s, and it is hard to distinguish the person I am from the body that traps me.  I find that it is not as much about the weight that I've gained and my drastic change in appearance--as evidenced clearly in these photos--but it is the life that has slipped away over the years as time progressed and I became more sick. I feel like a remnant of my old self.  I am hoping that soon, I'll be able to rejoin the trajectory of the exciting life I was building before Cushing's struck my life with such a vengence. Of course, I know that while detoured, my life will soon snap back into the part of my trajectory that was meant to be.  Lucky for me, I will be bringing my husband and miracle baby along for the ride. 

~moxie melissa

To make my photo summary, I used Google Picasa.  It is very easy.  

1. select the photos you want to use in a collage
2. upload them into a new album and name it 2010 Cushing's collage so you can find it later
3. one by one, open each photo. 
4. crop each photo to include your face from the top of the head to the bottom of the chin. this will make all the photos look uniform as well as focusing on the drastic changes of your face.
5. place the photos in chronological order by dragging and dropping them into the right order.
6. hit the collage button at the bottom toolbar, 
7. select the type of collage, then same size photos.
8. select create collage.  
9. eliminate any distracting colors by making the entire collage black and white. There is a button on the left panel.
10. select the width between the photos and background color. I like a small width with a black background. I think it makes the photos pop.
11. Add text for the dates above each photo.

• put your cursor on the first photo in the college. click on top of the photo.
• go to the icons on the left panel, choose the big T for text, type the year. 
• use your cursor to reposition each text box to touch the top of each photo in the middle, so it would all look uniform. Just drag and drop. 
• Repeat until you have a box for every photo. 

Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy

I found this article. A little dated but shows that some Texas endocrinologists recognize early to mild Cushing's. Yahoo for the DFW Cushies. Good luck to you.

NOTE: This post is not recommended as medical advice. Please visit your doctors on your own accord, and make your personal health decisions for yourself. Never substitute my judgment for your own.

~Moxie Melissa


Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy

Medical News Today
Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy
09 Dec 2007

Researchers at UT Southwestern Medical Center have found that patients with a mild form of Cushing syndrome, a metabolic disorder caused by adrenal tumors, demonstrate substantial clinical improvement after adrenalectomy.

The study, appearing in the December issue of the journal Surgery, is the largest series of surgical outcomes reported in patients with subclinical Cushing syndrome to date, said Dr. Richard Auchus, associate professor of internal medicine at UT Southwestern and co-author of the study.

"We don't have enough data to come out with a definitive statement that everyone with an adrenal tumor and mild cortisol excess should have the adrenal tumor removed," Dr. Auchus said. "We can say, however, that there are many people with large adrenal tumors who, while not meeting classical criteria for Cushing syndrome, nonetheless suffer from the hormonal disorder and will benefit from surgery."

Cushing syndrome occurs when the body's tissues are exposed to excessive levels of cortisol, a hormone which helps regulate glucose and fat metabolism. Cushing syndrome is caused by tumors of the pituitary or adrenal glands making too much hormone for long periods of time.

Symptoms vary, but most people with Cushing's, also called hypercortisolism, have upper body obesity with increased fat around the face and neck. Diabetes, hypertension, thin skin, muscle weakness, bruises and fatigue are also common.

Though the more overt Cushing's affects about 1 in every 5,000 to 10,000 people, milder, or subclinical, Cushing syndrome may affect as many as 1 in every 1,000 people in the population, Dr. Auchus said.

In the current study, Dr. Auchus' research group analyzed the records of 24 patients who underwent adrenalectomy at UT Southwestern between 2003 and 2006 because of abnormally high cortisol production. Of the 24 patients, nine met the researchers' definition of subclinical Cushing syndrome.

Dr. Auchus said the results were telling. Diabetes and hypertension improved considerably in most affected patients after adrenalectomy. In addition, all eight patients who reported easy bruising before surgery noted resolution of the problem, and seven of the nine patients lost weight. Fat accumulation around the neck disappeared and muscle weakness improved, often markedly.

"We cannot promise everybody the same results," Dr. Auchus said, "but we found that adrenalectomy can dramatically help some patients."

Dr. Auchus said there are many caveats to their findings, chief among them that the study was not random.

"It was a very select group," Dr. Auchus said. "Because they had certain clinical symptoms, we offered them surgery.

"We now have a handful of additional people who have biochemical indications of subclinical Cushing syndrome, but we haven't recommended surgery because they don't have hypertension, obesity or easy bruising. We're continuing to repeat their blood and urine tests for cortisol function over time."

The classic manifestations of Cushing syndrome, such as purple stretch marks and paper-thin skin, occur only in severe cases. Patients with overt Cushing syndrome are generally diagnosed after a 24-hour urine collection for cortisol. Levels higher than 50 to 100 micrograms a day suggest Cushing syndrome.

It is more difficult to diagnose subclinical Cushing syndrome because patients' symptoms are non-specific, such as fatigue, obesity and hypertension. Using the traditional diagnostic tests, patients with subclinical Cushing syndrome rarely have enough cortisol in their urine to raise concern.

"The cutoff values are intentionally set high so that we minimize the false positives," Dr. Auchus said. "But when you do that, you miss those with early or subclinical Cushing."

Dr. Fiemu Nwariaku, associate professor of GI/endocrine surgery and vice chairman of surgery, said the message to physicians is to maintain a high level of suspicion for hypercortisolism in patients whose biochemical tests are not completely normal and repeat biochemical studies periodically.

"Unless a patient's test results are clearly negative, they should probably get more complete testing," said Dr. Nwariaku, senior author of the study.

The researchers next plan to organize a multicenter trial to define better subclinical Cushing syndrome and guide recommendations for diagnosis and therapy. They also plan to study the genetic mechanisms of why some people suffer the manifestations of mild hypercortisolism, which others don't.

Other UT Southwestern researchers involved in the study were lead author Dr. Ian C. Mitchell, surgery resident; Dr. Kavita Juneja, internal medicine resident; Dr. Alice Y. Chang, instructor of internal medicine; Dr. Shelby A. Holt, assistant professor of surgery; and Dr. William H. Snyder, professor of surgery.

Visit http://www.utsouthwestern.org/patientcare/medicalservices/endocrine to learn more about UT Southwestern's clinical services in endocrinology.

UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390-9060
United States
http://www.utsouthwestern.edu

Article URL: http://www.medicalnewstoday.com/articles/91136.php

Main News Category: Endocrinology

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REOCCURRENCE: Hard to know for sure

I wanted to take a minute to update y'all on my progress post op. There has been so much that happened.

First off, the best thing I can say is that I am happy that I am 6 months post-op. I survived 180 days of uncertainty. Many days, I didn't think I could do it. It PAINED me more than you could ever know for me to move through my days and nights, not knowing what will happen to me (and my family), and not being able to plan. I broke a lot of plans, I missed a few birthdays, and I didn't DO as I normally DO. But I tried. And for 2009, that has to be good enough.

I thank my husband, in-laws, and my mom and dad for helping me with the baby and even taking pretty good care of me.

You always know that I tell patients, regardless of their disease(s) but especially Cushies, to partner with their doctors in their health care. That's good to say and all, but I have an example today, so I wanted to share it with you. Hopefully, it will demonstrate HOW I communicate with my doctors (descriptive, detailed). I have been lucky to surround myself with a knowledgable and responsive and caring team of doctors (and their staff!), and I hope the very same for you.

Here is the email that I sent my endocrinologists in two different towns in an effort to keep them in the loop as far as my testing and planning. It serves as a quick recap.

Dear Drs. XX and XY,

Per our discussions at my appointments earlier this month, I committed myself to testing for Cushing's last week. I tested from Saturday to Sunday, and Monday to Wednesday. Those results should be on the way to your office by now. I ask that you and your staff keep an eye out for these tests results:

* 2 tests: 24-hour urinary free cortisol (UFC)
* 2 tests: 12am cortisol/ACTH at hospital
* 2 tests: 8am cortisol/ACTH
* 1 test: hemoglobin a1c

Would you please email me a copy of the test results after you review them?* I am sure you can understand my anxiety over these pending results... Could I be cured? Am I still suffering from Cushing's? This disease has turned my life upside, and I am hoping that it is finally over, but I am worried.

I know this may sound drastic, but I have been having several symptoms that make me think that my Cushing's may not be cured. Since my Cushing's is cyclical, the above tests may or may not show high results. These are my symptoms in the past three months:

* cortisol serum at 8am of 18 (20 is considered high post op)
* ACTH plasma at 8am of 29 (30 is considered high post op)
* low IGF-1 again (59, 66) after one normal 145 post op
* high blood pressure (140s/100 at several doc appts)
* high blood sugars (consistently 150 for several months, having never experienced high blood sugars before)
* sleep disturbances (difficulty going to sleep, up all night, waking at 4 am)
* inability to lose weight/fast weight gain in October/November
* more energy than most days
* acid reflux
* pain in my buffalo hump

If these test results are high, I want to work with Dr. "neurosurgeon" to schedule another pituitary surgery by the end of the month/insurance year. That will save me over $2000 because I would have to meet my deductible and maximum out of pocket expenses for my insurance.

My hope is that my hormones are still trying to get back in balance, and these symptoms will soon resolve themselves. However, I am a realist and I want to look at the data and make good decisions going forward.

I appreciate your help in battling Cushing's disease. I hope you can accommodate me as I try to work with all of my doctors and keep track of all of the pertinent information regarding my health*. Ugh. That's a hard job.

Sincerely,

Melissa
DOB: 11/--/19--
...-...-.... cell
http://cushingsmoxie.blogspot.com/

* Please take this as my consent to release these lab results to me, the patient, via email.

FAQ U: MELISSA'S MAIL BAG

Sue left me a message on my favorite Tips to Get Diagnosed Quickly post. She asks such good questions that I decided to answer them here. Oh, and the babe was sleeping at midnight, so I had time =).

Thanks for the encouragement to be proactive. I have a twenty year old daughter that had a MRI for headaches three months ago. They found an enlarged pituitary gland. Now, three months later it is a recognizable pituitary adenoma 5mm x5mm x8mm. Her doctor keeps reassuring me that it is so tiny that it is probably not the cause of her headaches and that it is no problem that we can't get in to the USC specialist for seven more weeks. I recognize many signs of Cushing's including weight gain in the last six months, new vertical purple stretch marks on her abdomen, complaints of bruises, acne, boils and even an insect bite infected with staph, Also she has constant vaginal yeast infections, a sinus infection diagnosed by the MRI, apathy, and memory problems. My daughter has Asperger Syndrome and she rarely expresses her emotional or physical feelings, so this is somewhat like pieces of a puzzle coming together. Do you or anyone else have advice on waiting to see the so called "best Endocrinologist" as we were referred to by our doc? Do all the endocrinologists mentioned on the site require recommendations from primaries? My PPO does not. Again, thanks for your encouragement to be proactive - when I speak to my daughter's doctor I feel she is trying to assure me it is nothing to worry about. I want to be fully informed and do what is best for my daughter. Thank you for sharing all of your experience so willingly, I am sure you are helping many.

Sue, I'm so glad the words I wrote 18 months ago are helping people still today. I'm sorry your daughter may have Cushing's. No one wants to hear that. This is a big deal. Don't let them minimize it. Be an informed, persistent, and tenacious advocate for your daughter. She is sick and needs your help. Those symptoms sound like Cushing's symptoms. Worry, ok, but pack enough information into your brain that you can nudge them along your way.

One of my favorite posts about the urgency to get treated comes from the former founder of the Pituitary Network Association. I call it, Cardiac Paddles to the Chest .

That pituitary tumor is pretty large. Mine was a microadenoma at only 3 millimeters. A macroadenoma is larger than 10 mm or 1 cm. Both sizes can cause headaches for some patients. Plus, it seems that the pituitary tumors resected during surgery end up larger than the MRI shows.

Do not wait 7 weeks, unless you try all these things:

1. ASK DOCTOR STAFF TO HELP YOU GET AN APPOINTMENT WITH THE SPECIALIST. Ask your doc to call best Endo doc directly for the appt. Staff could try first. Tell them you need their help. Fake apologize for being a worry-wart mom. Go in person, and offer to wait in waiting room until they do it =). Ask that doc 1 fax all clinic notes, labs, and radiology/MRI reports to doc 2 in advance of appt.

2. FIND AN EXPERT. Check these websites for helpful lists of doctors familiar with the treatment of Cushing's. Is there another specialist nearby? Don't put all of your eggs in one doctor basket. Work the system.

* Cushing's Help & Support. On its message boards, we Cushies discuss our favorites under Doctors and Hospitals.

* Pituitary Network Association

* Cushing's Support & Research Foundation

Make an appointment with another doctor if you can get in before 7 wks. Keep other recommended "best endo" appointment. You will feel better for not waiting, and you will arm yourself with more info with a 2nd opinion. Be sure to call your PPO insurance directly to see if doc 2 is in network. Most do not require a referral. Be sure to ask the office staff.

3. TESTING FOR CUSHING'S. Can you tell me what testing your daughter has done for Cushing's? What came back abnormal or high? If no testing besides the MRI was done, ask your referring doc to order some for her while you wait to see the "best endo." Then that doctor can review the results at the first appointment, saving valuable time and giving you a feeling of forward momentum.

Request these tests to diagnose Cushing's
For a good overall assessment of Cushing’s, be sure you leave your doctor's office with:

1) copies of all of your lab results to date;

2) four lab orders for each of the following tests, to test as you see fit, according to your symptoms:

* 24 hour urinary free cortisol (UFCs): normal range is 0-50. diagnostic is over 50.

* midnight salivary cortisol (from your spit): normal range is 0-0.17. diagnostic is 5 and over.

* midnight cortisol serum(from blood draw): normal range is near 0 at this time. suggestive is over 5. diagnostic is 7.5 and over.

* cortisol serum tests (from blood draw). Lab samples must be taken at 8 am and/or 4 pm. If they are not taken at this time, the results do not count.

* random ACTH plasma (from blood draw). Many Cushing's patients see very high levels at 4 am, don't know why. Normal normal range is 5-27. diagnostic is over 48, over 100 really turns the docs on! These lab samples must be handled very carefully to get an accurate reading. I will post a link to the proper handling when I can find one.

In addition, there are many tests that you can ask a doctor to order for an overall hormone assessment. Since the pituitary is the master gland, controlling the release of all hormones in the body, a tumor can cause the malfunction of other hormones produced in other organs.

These tests usually include:

* thyroid panel (TSH, T4, T3)
* pituitary panel (LH, FSH, prolactin, IGF-1 as measured through the liver from growth hormone in the pituitary)
* hormone panel (estradiol, testerosterone, DHEA, etc)
* vitamin B12, vitamin D, ferritin — many Cushies have very low levels of these three. If ferritin is low, it explains hair loss.

Oregon Health and Science Center in Portland, OR shares these suggestions when working with your doctors.

Others may suggest that you ask for other tests. I didn’t feel comfortable asking for specialized tests before I got the basics ones first. I felt that if I had the first battery of tests done and something came back abnormal, then I would ask for others. This approach worked well for me.

4. GET SMARTER. Just like in chess and billiards, winners have several moves in mind before making their current move. Adopt the same concept. Use the wait time to research Cushing's and the next steps. For example, do they recommend an IPSS, which confirms the pituitary as the source of ACTH excess? The test is invasive but proves the tumor needs to come out and it is not just an incidentaloma (real word!). Many patients I know get this test. It is important info for the endo and neurosurgeon, but for you, your daughter, and your peace of mind. My IPSS results were 78 times the normal limit (3 times normal is diagnostic), and this test convinced my neurosurgeon to move quickly.


If I can help, please contact me again. I am trying to make more time for this blog and the people who find me--out in cyberspace. I take my role as advocate seriously.

Peace, joy, and hope to you and your family.
--moxie melissa

Fighting My Way Out of the Funk

I'm sorry. I haven't been posting here. I realized I didn't want to share any bad news. People don't expect that from me. People really don't want to hear bad news. They have their own problems. In this economy, people are taking a beating in all aspects of their life. I find that the more I keep it all to myself, the better everyone else feels around me. I don't want to be Debbie Downer. Who does?

However, I have realized in the last two weeks that I can't keep it all in anymore. I physically can't keep it in. Emotionally, I can't keep it all in. I miss "telling" my experience to "someone." It really doesn't feel like anyone really listens in my "real" world. I can't blame them. There are far more interesting things to discuss than what my latest ailment entails. While I don't blame them, I have been feeling increasingly sorry for myself. That's unfair, and it is a tremendous load to care alone. So I decided that I will try to put it out "there" so that I don't feel like I am keeping it all pent up inside. Maybe this will help. Something has to. Soon.

It's therapeutic, somehow, to know that someone else may have experienced or might experience what I am going through now. So here it goes. Shorter posts, hopefully helpful, even if just to me.

I hate to blog and run, but I've got to put the baby to sleep. ~Melissa

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I am always encouraging people to take charge of their own lives, especially their own healthcare. So for now, I wanted to share a book I just saw mentioned on the Dr. Oz Show from Dr. Lisa Sanders. I'm gonna download it on my Kindle on my iPhone now. Good. Something new to do. I am looking forward to reading this book: Every-Patient-Tells-Story by Dr. Lisa Sanders

Click here to read an excerpt from the book Every-Patient-Tells-Story by Dr. Lisa Sanders

I also found this from the Oprah.com site:
Every-Patient-Tells-Story by Dr. Lisa Sanders

How to Help Your Doctor Help You
By Naomi Barr

Gregory House, MD, the main character of the Fox TV show House, isn't like other TV doctors. While they obsess over emergencies, surgeries, and affairs of the heart, House is all about the subtle art of diagnosis. That's no surprise given the inspiration for the series—the New York Times column "Diagnosis," by Lisa Sanders, MD. In her new book, Every Patient Tells a Story, Sanders uses puzzling medical cases to illustrate how narrative can help you help your doctor. Here, she shares some pointers:

O: How do I know what to tell my doctor?
Sanders: You're telling your story even before you call a physician. You share it with your friends, your mother, your spouse. You tell them about the pain you're feeling—what makes it worse, what makes it better, how it affects your life. Use this info, and then be prepared to answer the questions that doctors ask.

O: What kinds of questions?
Sanders: Actually, the first question is one that I find doctors rarely ask, though they should: "Do you have any idea what this is?" Patients usually do have a sense of what is ailing them. So if your doctor doesn't ask, speak up. I had a patient with fever, low blood pressure, sore throat, and maybe diarrhea. I took a good history and did a thorough physical exam. But 48 hours later, all the tests (Lyme disease, various other bacteria, salmonella, etc.) were negative. As I was giving her the results, she said, "Oh, I think this might be dengue fever because I was just in Puerto Rico visiting relatives and everybody in the neighborhood had dengue and felt just like this." Sure enough, that's what she had. Another important question: "Has anything like this ever happened to you before?" Patients often overlook this. If something strange happen to you once, okay, everybody has one freak occurrence. Twice? That's a pattern.

O: What happens if your doctor doesn't take the time to listen?
Sanders: If your doctor interrupts before you are through, indicate to her you're not done. We have no idea which detail is going to be useful until we hear them all. When you get a chance, say, "I'd really like to go back to my story. I still have some thoughts about what's going on." You are the expert on your experience, and no one but you can describe your area of expertise: your body.

WHITE ON RICE: Get Your Test Results from your Doctors

Are you one of the people who still believe your doctor is always looking out for you? Naaah... really? They try, but the docs and their staff are overwhelmed. I've been in a lot of waiting rooms in the past two years. I bet it is safe to say that in the course of an 8-hour day, doctors see at least 2 patients an hour, or at least 16 patients a day x 5 days. That's 80 people just like you, trying to get help or get treatment. That's a lot of lab work, insurance filing, appointment calls, and processing to keep up. It all repeats the next Monday, too, and the Monday after that, and the Monday after that.

I wanted to share this link about a study posted in USA Today that found many patients do not get a call from the doctor regarding abnormal test results. These results get stuck on someone's desk or filed away in a patient's chart.

If you do not ask for your test results, this could be you.
If you do not take an active role in your healthcare, this could be you.

What can you do?
I always ask the doctor how long it will take to receive the test results.
I then ask the lab tech that draws my blood how long it will take to process the labs.

If they say 4 days, I set a reminder in my iPhone calendar to call on day 5. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.

If they say 2 weeks, I set a reminder in my calendar and call on day 15. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.

ALWAYS. As I have said numerous times on this blog, if you do not care about your own health, why would anyone else?

~Moxie Melissa