Sunday, April 29, 2018

Tips for the ER #1

April is Cushing's Awareness Month.
We Cushies have to go to the emergency room when we face adrenal insufficiency and adrenal crisis. I'll post some additional links (here), (here), and (here).

Tip #1: Stay focused on what you need
Dehydration, infections, and the inability to keep down oral cortisol replacement cause Cushies to take the dreaded drive to an emergency room. So before you get there, psyche yourself up on the ride over. You better mean business, or you won't get the help you need if you don't push for it.

When checking into the ER, I present my instructions from Adrenal Insufficiency United that states I should not be triaged. When the nurse tells me to sit down and she will be right with me, I refuse to go sit down. I ask that those instructions be reviewed by the charge nurse or ER medical director, and that I will there at the desk until nurse returns. This usually gets me taken back as the next person.

Tuesday, April 24, 2018

TEAM TUX UPDATE: Service Dog for Cortisol Detection

As you may know, I have a service dog to detect low cortisol.

Tux alerted me that I needed meds on Saturday. I got my emergency kit. While I held it and unzipped it, he nosed his way into it and grabbed the bottle of hydrocortisone with his front teeth!! We have never trained for this: never used saliva samples and never played any scent games. He couldn't pull the bottle out because it was packed tightly among three boxes of Solu-Cortef. I'll reconfigure so he can do what he needs to do!! Another VICTORY for Team Tux.

Off and on, when I remembered, I would put him into SIT position, let him smell my breath before taking any stress dose hydrocortisone or my daily prednisolone doses, let him smell the medicine in the bottle while I repeated the name to him and why I use it, then I would place the HC under my tongue and let him smell again. I always ask him to "Let me know when I need this hydrocortisone. You are so smart, and I know you can help me." 🐾 🐶

Angela Boswell, our trainer with Service Dogs Express, told me to name the meds as I take them. So I did, again, as I remembered, and here we are. Monica, a fellow Cushie/BLAer/ service dog handler, describes a game they played: "We play "find the hydro," which is based on what we learned in nose work class. I hide my bottle of hydrocortisone in different places around the room and give the command "find the hydro! Then Dubly goes off to find it. When he brings it to me, he gets a treat. This will ensure that I can send him to get the medication no matter where it is."

—Team Tux was founded on March 19, 2017. Tux accompanied me to the Adrenal Insufficiency United conference one year later, an absolute dream dog with excellent public training. We have never used scent samples. We didn't buy a pedigreed pup from a breeder. Tux was a rescue found on the streets. After one year, I bet we have only spent $3,000 including adoption fee of $300 and weekly training visits. Tux began alerting three months after we got him. Getting a service dog to detect low cortisol and associated symptoms (low blood sugar, rapid heart rate) is possible. Go for it. 🐾

PS Tux has two handlers. He also alerts to my husband, a type 1 diabetic for 30 years).

PS2 We have been delighted with our trainers Angela Boswell and Mark Palmer and the program with They train handlers over Skype, FaceTime, and Facebook Messenger video. I have a FAQ post percolating that will outline how we got started, what we did, and how we work with the trainers, which i hope to finish soon.

Friday, April 20, 2018

Adrenal Crisis: What to Do


Adrenal crisis is a reality for most Cushing's patients post op pituitary surgery and post op single adrenalectomy (unilateral adrenalectomy ULA) or double adrenalectomy (bilateral adrenalectomy or BLA). In fact, this article published in ——- in the journal ——- (insert link) says that even educated patients go into adrenal crisis. "Insert quote from article"

 listing the top three reasons for adrenal crisis:

(Insert red graphic)

adrenal crisis is a stop sign. Take steps before to ensure you stop in time.

(Explain more)


(Insert AIU graphic)

How many symptoms of adrenal insufficiency do you have? Start stress dosing when you have 2-4.

Add part about looking at activities for the day, staying ahead of cortisols hole. 

For me, it starts with stomach pain. I feel like something just stabbed me, and I put my hand on my abdomen to check if someone hasn't stabbed me when I wasn't looking. Then comes the lower back pain. I have degenerated disks from L3-5 and S-1, so I'm not sure if it is really adrenal insufficiency. When the diarrhea hits, I know there is trouble. It's never the soft serve stool kind. It's the explosive fish flakes almost water kind. Once I get three symptoms, I take 20 mg hydrocortisone under my tongue, which tastes horrible, and set the timer for 45 minutes. It I don't feel remarkably better (like a wilted flower that perks up with water), then I take another 20 mg. If I have diarrhea again, I take another 40 mg HC under the tongue and set timer again. I'll try to get gatorade/ electrolyte drink and add pink Himalaya sea salt to the lid and dump it in. Plus I lick my arm. If I'm salty, I know I'm losing salt and then sodium becomes too concentrated in my blood, which causes potassium goes too low. So then I start drinking the pickle juice. Yum so tasty. If I have diarrhea more than three times, I inject myself with the solu cortef injection, placing a 3" needle into my thigh. My husband or I drive to the ER because now I'm dehydrated, which concentrates and increases the sodium, which lowers potassium, which is so dangerous.

I have to convince the intake nurse that we ought not be triaged because this is life-threatening just like a type 1 diabetic with low blood sugar!! I have to show them an emergency letter from my doctor (not at that hopsital), the National Adrenal Disease Foundation letter, and Adrenal Insufficiency United infographics stating we should skip triage. The nurse tells me to sit down, and I refuse. I say I will stand at the desk and wait.  I ask him or her to take that letter to her manager. This tactic usually works. I am the next to go back to get vitals checked. Then I get a room!

Once I get back to the room, the struggle continues. Sometimes I get a doctor who understands what I'm asking for: IV fluids and IV Hydrocortisone 100 mg. Other docs tell me that I can't be in adrenal crisis because my blood pressure is high. I explain that I took extra steroids (____ mg HC) at home because we are taught to self-treat cortisol lows like a type one diabetic is taught to self-treat blood sugar lows. After multiple dehydrating events like diarrhea and vomiting, I must come to the ER for IV fluids. Labs run at the ER should not determine my need for IV hydrocortisone and IV fluids. I am taught to go to the ER in adrenal insufficiency as a way to prevent adrenal crisis. 

It should simply be as easy as saying, "I'm facing adrenal insufficiency and need IV fluids and IV hydrocortisone." However, it seems it is always a battle to get those. Having those letters on file so ER staff knows your medical condition is helpful but still doesn't always work. Many are tempted to treat at home and avoid the ER based on past experiences at the ER when they didn't get the help they deserved and needed. This is a dangerous situation for us patients, because when we need IV fluids and IV hydrocortisone, we need it. Although adrenal insufficiency is considered rare, just as Cushing's is, we must educated those around us to ensure we get the care we need. Don't give up on this. These efforts can and will save your life. 


save infographics on your phone in adrenal

Crisis folder

Hold a meeting to discuss your condition with friends and family. They must know how to help you. While you may want to avoid this, let me state here that people would rather know how to help you—no one wants you to die on their watch. The guilt and sadness of not knowing what to do to save you is too heavy a burden for our loved ones to carry. Make it fun. Make up pretend scenarios,  ask them questions and have them find the answers in the folders (below). Just as fire drills help us know what to do in the event of a fire, adrenal crisis drills help in the same way.

Create paper copies in folders with this info to keep in the cars of anyone you would ride with or who would visit you in the ER and hospital. Information is easier to see when printed out on larger paper, although phones have worked too.

Send same images to friends and family, anyone who you spend time with 

Wednesday, April 18, 2018

PRO TIPS: Testing cortisol saliva at midnight + marathon testing

Endocrinologists order several tests to see if your body's cortisol production is abnormal. These tests include:

  1. 8 am cortisol serum/ blood and ACTH plasma/ blood
  2. 24-hour urinary free cortisol (UFC)
  3. dexamethasone suppression test
  4. midnight cortisol serum/ blood
  5. midnight cortisol saliva
I'll be talking about midnight cortisol saliva and 24-hour UFC today.

Doctors instruct patients to take cortisol saliva tests at 11 pm. Some patients get high results at this time, while others don't. For the patients getting normal results, this is confusing and devastating. As a result, doctors often tell the patients that they do not have Cushing's. Patients feel tears well up in their eyes, leave doctor's office, and burst into tears, thinking they will never find out what is killing them slowly every day.
Pro tip #1: Do the saliva cortisol tests between 12:10 and 12:15 am several nights in a row. In the fall of 2017, several patients were frustrated that their midnight saliva cortisol testing came back normal repeatedly. Their doctors told them to test at 11 pm. However, I suggested that patients test between 12:10 and 12:15 am because cortisol spikes in Cushing's patients at midnight when cortisol is zero in normal people allowing them to go to sleep. This is how I did my tests when I was testing for Cushing's (fyi--I was diagnosed with Cushing's four times in six years). When these patients followed my pro tip, they happily reported back that they finally go high cortisol saliva results. They have since gone on to have surgery for Cushing's.

Be sure to follow the instructions and abstain from drinking anything or brushing your teeth 30 minutes prior to the test. Quest Diagnostics' instructions are pretty standard, so be sure to review them prior to completing these tests. ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@

Pro tip #2: Test urine and saliva on the same days, several days in a row.

Doctors don't tell us this. They say, just test when you can. I don't recommend this. The burden of proof is on the patient to produce abnormal test results. Any normal results lead a doctor to rule out Cushing's and stop all testing of cortisol. This is a HUGE obstacle that many Cushies who have cyclical/ intermittent/ episodic cortisol production. Doctors learned in medical schools that:
  1. Cushing's is so rare, and they will never see a case of Cushing's in their entire career;
  2. all patients with Cushing's are florid, meaning tests conducted at any time will always show high cortisol levels in saliva, blood, and urine.
Testing urinary free cortisol (UFC) and saliva cortisol on the same days on consecutive days is essential for patients, as it shows doctors that:
  • midnight saliva cortisol can be high even when 24 hr UFCs are normal, or
  • midnight saliva cortisol are normal even when 24-hour UFCs can be high
  • your body's cortisol production varies widely in the same week.
    This is absolutely critical for the Cushies with cyclical/ intermittent/ periodic/ non-florid cortisol production. 

1) Bring your doctor's lab requisition/ orders to local lab.
2) Lab tech will review lab orders and give you the number of orange jugs you need.
3) Ask for a "urine hat." This allows us to urinate comfortably into a receptor, then pour the collected urine into the orange jug.

So, how does this work?
  1. Create large notes and tape them to the toilet seat cover in all of your bathrooms. This will ensure you don't forget that you are testing.
  2. Choose one toilet to be your testing spot.
  3. Place the "urine hat" from the lab in that toilet under the seat.
  4. Use a black marker to label all of your UFC jugs with your name, date of birth, and date of test, and test number. (#1-5 if you are doing 5 days of testing)
  5. Void/ urinate in the toilet at 8 am* to start the 24-hour UFC test.
    (You do not want that urine, as it was produced by the body in the hours before your test is starting.)
  6. Catch all urine in your urine hat. Immediately pour this urine into the orange container every time you urinate for the next 23 hours and 59 minutes.
  7. Keep your urine container cold. Refrigeration is best.
    (Keep your urine jug in a plastic or paper bag. You can place down a cloth towel or paper towels on the shelf in the refrigerator. Urine collections that are not kept cold will grow bacteria, and the lab will throw out your test.)
  8. At 8 am,* urinate into the orange container once last time to catch all the urine your body produce in that 24 hour period.
  9. You just completed your first 24-hour UFC. YAY!
  10. Start another 24-hour UFC.
    Don't worry about voiding before the test. You did that already. It's in the previous urine collection jug.
  11. Go back to step 6 if you are doing multiple tests.
    (Essentially, don't let another drop of urine hit the toilet for five days or however many days you are testing. I've completed consecutive 9 UFCs in the past.)
* You do not have to start your urine test at 8 am. You can start at 9 am, 10:23 am, whenever. Just make sure that you end the test and urinate in the jug one last time at the same time the next day. This will ensure you captured urine for 24 hours.

* Take your completed UFC test to the lab daily. Labs are notorious for mishandling or losing multiple tests when submitted at the same time. Don't ask me why. Just know that they will lose those tests--all your hard work for days. Save yourself the horror: make a trip to the lab and give them one test at a time. Yes, this is time consuming, and yes, the lab should do better. However, if they lose your UFC test, you will be the only one crying. Plus, you will have to repeat the test.

I hope all of your results are high, and you get to diagnosis quickly!

MOXIE MELISSA P. S. Need more moxie in your day? Go find me on Facebook by clicking Fight Cushing's with Moxie.