Detailed SOLU-CORTEF actovial instructions with Photos

Detailed SOLU-CORTEF actovial instructions with Photos. These are the best and most thorough that I've ever seen. 

Add this to your emergency kit. Place it on your refrigerator. Add to service dog vest.

Train loved ones to save you! I mean, if they like is, they want to keep us around, right?! 💙💛💙

https://lookaside.fbsbx.com/file/SoluCortefInjection.pdf?token=AWwb4c4CLuRVn5T0-uTz9mO9lqJVILalGmfFsyvYL2tY_Hxcegi8-91j6teFGZsbSgB0xtTkXNLoL5NA4J28-wDaNertuIUCA420uHRNGiUJvc6GRbRvGhI1BeWwuvwTwFarE8usdLJc7vcj46Y6R9TQHwQPI_ANio2tTD2OHJ-570e-sBMBD-r-HGsKNE2seX0tZ-o8tbPv6Hy3gU5IvwlC

Choosing a BLA surgeon

(Updated September 5, 2018) How do you choose a BLA surgeon? What do you need them to say that will prove to you that will get every last one of those adrenal cells out of your body when they do your BLA? I share the questions I asked my BLA surgeon three years ago.

The internet is loaded with articles about how to choose a surgeon. Consumer Reports gives its suggestions. So does Forbes.

    part 1:  A respected surgeon says get a second opinion

    part 2: What surgeons know about picking doctors that you don't

Even Medscape posted a study in early 2017 about How do patients choose surgeons (51% based on who accepts the insurance!). It also seems that Cushies have surgery with whoever their endocrinologists work with regularly and recommends, often describing those surgeons as "the best around."

I would argue that we need to be considering other things as well -- more medically-specific issues.

When the time comes for bilateral adrenalectomy or BLA, a Cushie has to choose the right surgeon. A google search didn't turn up much other than basic information from medical universities about Cushing's and BLA as a treatment. I did find this 2016 article Adrenalectomy for Cushing’s syndrome: do’s and don’ts, but doesn't help us when interviewing a BLA surgeon. The article tells us more when BLA is the best treatment, which is not what we are seeking.

I share so much information here in my little corner of the internet because the patient experience after BLA is nearly non-existent online. When Cushies search for information, I want them to find it. So I just post the list myself. My friends in the BLA group always help me learn more about this disease, so some of the knowledge I share here is as a result of learning from them.

I asked my BLA surgeon these questions in 2013. Yes, I asked all of these! Access to Information before making a decision is my right as a patient, and no surgeon is cutting into me without a thorough but friendly interrogation.

-- How do you reach the adrenal glands? Which operative method do you use to perform BLAs: posterior retroperitonial laparoscopic approach or anterior laparoscopic approach? What are the benefits and risks of each method?

Retroperitoneal refers to a posterior or back approach, while anterior refers to a front or side flank approach.  The posterior approach allows for direct access to your kidneys and adrenal glands. The traditional anterior surgical approach requires incisions in your abdomen and requires surgeons to work around your liver, spleen, pancreas and colon. 

I had my BLA done via posterior approach. Here is one 2012 article I found about retroperitoneal BLAs. I did not suffer much pain pain post op so I didn't take many pain killers. I could move around easily because our bodies bend forward, not backwards, in our daily lives.  I know many people who have had their adrenal glands removed from the front or side. They experience a reasonable amount of pain and discomfort from the abdominal surgery, but they manage with cautious moving and pain killers. They survive and would do it again.JUST REMEMBER: Many doctors have been trained to perform BLAs either using the posterior or anterior approach, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.

-- How often and under what circumstances have you converted from a laparoscopic approach to an open BLA? 

-- How many BLA procedures do you perform each year?

A Cushie friend P asked me who performs adrenalectomies. Answer: general surgeons or bariatric surgeons. This 2009 article entitled Which matters more: volume or specialty? reviews the outcomes of over 3,000 surgeries performed by nephrologists and general surgeons throughout the United States It is recommended to go with the surgeon that does a high volume of these surgeries for a better outcome.

-- Will you perform the surgery or do you have anyone else assist you? 

I prefer you to do it. I do not give consent for a resident or fellow to participate in my surgery.

-- Will a robot assist in my surgery?
This is a real thing. You better ask. Then click here to see how many adrenalectomies are listed under the 'robot' column.

-- Will my weight cause any surgical concern?

-- How much exploration will you do to search for ectopic adrenal tissue?

Give permission and encourage surgeon to really explore the area. Causes for persistence or recurrence of endogenous cortisol production were incomplete removal of the adrenal glands and ectopic adrenal tissue, which could be identified in locations like the retroperitoneal fat, the gonads, or the mediastinum.

-- How do you handle the adrenal gland once detached? Do you bag the adrenal? 

My surgeon said he doesn't cut into the adrenals. He cuts them away from the blood vessels, bags it, removes it, and sends it to pathology. This keeps him from leaving any adrenal cells behind.

-- How do you ensure that you remove even microscopic adrenal cells? Do you scrape the adrenal beds?

I drilled my surgeons about rest tissue and making sure they got the fat surrounding the adrenals. How does he/she make sure all adrenal tissue is gone, out of hiding. You want them to remove all the surrounding fat. My left adrenal slid south below the kidney!! My surgeon said it was a "normal" congenital defect"--that's an oxymoron!  Your surgeon needs to explore and track it down.

-- The adrenal glands are fed by many vessels and nerves. How do you navigate around these to avoid damage to the kidneys and other structures?
The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.

-- Incidence of rest tissue or remnant tissue after you perform BLAs? 
informal study from BLA group of 550  post-op BLA patients suggest < 10%

-- Incidence of Nelson's of patients (med lit says 20%)
informal study from BLA group of 550  post-op BLA patients suggest < 10%

-- How much hydrocortisone is administered before the surgery and during the surgery?

100 mg Solu Cortef via IV push at both, or before and after. You want all of that all at once, not drip drip drip via IV over a few hours. Anesthesiology team needs to watch for low blood pressure during surgery, as this is a sign of adrenal crisis. Be sure to discuss this with surgeon in the office, anesthesiologist before surgery, and surgeon before surgery at bedside. It is always a good idea to ensure everyone is on the same page (even if we are the ones who really should be getting this  reassurance).

-- How long do patients stay in the hospital?

-- Do the nurses that care for me post-op have special training on adrenal insufficiency?

-- When will you come visit me in the hospital? Daily?

I want to see you every day!

-- When are cortisol levels checked post op in hospital?

-- How will we assess the success of the surgery with lab work? 

DHEA-S is a good measure to check since this is made in the adrenals only. After both adrenal glands are removed, the blood cortisol level can be measured to see if the operation was successful if the patient is not taking hydrocortisone. In this circumstance, the patient should be given dexamethasone for several days before blood work since hydrocortisone can be measured in the blood test as cortisol and dexamethasone cannot. Most adrenal surgeons don't even worry about dropping cortisol and instead send the patient for post op labs/ blood tests for DHEA-S, comprehensive metabolic panel (CMP), and complete blood count (CBC) between days 5 and 10. That DHEA-S level should be very low. Mine was less than 0.1. My endocrinologist Dr. Friedman said that was a ZERO. 

-- Who will write the orders for my hydrocortisone while I am in the hospital? 
This is likely the most important question here.

* Endo should give you prescriptions for HC 5mg, HC 20mg, and solu-cortef actovial 100 mg *before* BLA so you can get them filled and ready at your home for after surgery. 

* Surgeon will order steroids for your hospital visit but may not dose you high enough to prepare the body for the plummeting cortisol we face. Some only get 20 mg HC a day the first day post op, which is not accceptable. We need at least 60 mg HC to allow our body time to stabilize and heal from the trauma of having our bodies cut open and organs removed.

* I proposed a post op cortisol replacement plan to my endo (Dr Friedman) at my pre-surgery appointment. At first, he said he was reluctant to give my surgeon any in-hospital cortisol replacement guidelines. He felt it would be stepping on "toes." I confirmed at my pre-op surgeon appointment that the surgeon's toes would be fine. He would do as Dr F and I worked out. After my pre-op appointment, I emailed Dr F the amount, times, and day post for his confirmation. I then replied to Dr F's reply and added the BLA surgeon.
I don't mess around, folks. That's how I had a sweet ride on a cortisol high (not really, just enough) for a few weeks to let my body heal. HEAL THYSELF!

-- How do I contact you if I am having trouble post op?
The doctor may say just tell the hospital nurse, and that nurse will contact his/her office. That's all good except that most nurses are very hesitant to bother a doctor with all of the patient's questions. READ THAT SENTENCE AGAIN. Most nurses are very hesitant to bother a doctor with all of the patient's questions, as many have been screamed at or reprimanded in the past.

For Cushies, we need direct access to the surgeon and endocrinologist.  

-- I have called the surgeon on my cell phone when the nurse wouldn't call after repeated requests. 

-- I have called the surgeon when the doc's fellows pay a visit and try to do something other than what the surgeon and I worked out at my pre-op appt. 

Don't be afraid to raise a stink and get the assistence or information you need. The folks there won't like it, but what can they do?! No... you will be out of there soon, so be sure you get what you went there for.

-- Under what circumstances should I seek emergency help after I leave the hospital?
The surgeon may say things like fever over 102 degrees, oozing wounds, extreme pain or redness at the incision sites, etc. Doctor should give you a number for how to reach him in an emergency

-- When will my pathology report be back?

-- How often will I see you for post op appointments?

-- Have you had any of your patients get sepsis or die 30 days after BLA?

-- Would you be so kind to take a photo with me?
"Since you are going to send this Cushing's in remission, this will be one of my before photos. I want to have a nice souvenir to remember us."

Cushing's is as bad as Cancer

As Cushies, we often struggle to let others know how poorly we are doing. How can they possibly understand when they don't know with Cushing's is?!

It seems in some people's minds, it's not as bad as cancer. Only cancer is as bad as cancer. That proves to be a very myopic perspective and limited understanding of all the diseases of the world.

Take Cushing's for example. We Cushies know the devastation we suffer physically, mentally, and emotionally from excess cortisol.

Cushies, we now have a tool to help us. The general population knows about cancer and multiple sclerosis. The authors of MANAGEMENT OF ENDOCRINE DISEASE: The Burden of Cushing's disease: Clinical and Health-Related Quality of Life Aspects compares these well-known debilitating diseases to Cushing's.

As you can easily see, untreated Cushies really aren't very well.

• Cushies experience a lower quality of life than cancer patients in these categories:
  general health, vitality, social functioning, and mental health.
• Cushies suffer equally with cancer patients in these categories: bodily pain, emotions.
• Cushies fair slightly better than cancer patients in this one category: physical.

Yet, where is the compassion? Where is the support? Where is the community to surround a Cushie and load them up with freezer meals and casseroles?

I don't take anything away from cancer patients. It is indeed terrible and life-threatening. However, they don't have the monopoly on suffering, and we Cushies wish people would stop trying to make us feel better by saying we don't have it as bad as they do.

The plain fact is that we Cushies often don't have a support community other than the ones we build to support each other online. "Cushies doing it for ourselves" is a great slogan, but we need the support of our loved ones, both family, friends, and coworkers. This makes the pursuit of Cushing's Awareness all the more important.

Growth hormone for $0 a month!!

I found out recently that Humatrope does not charge a copay for people who don't have the money for it!! I now pay $0 per month!! I used to pay $60 per month and I have paid as little as $50 for three month supply.

How did I find this out? Well, I complained to the specialty pharmacy that filled the growth hormone that because they require me to fill it every month and refuse to fill a 90 day rx, it costs me more... instead of paying $60 a month for two months $120 and get third month free, this would force me to pay $180 for three months. This was unfair, and she said there was a plan. Not income based. Asked if I take it every day... yes. Do I have trouble meeting the financial obligations for taking the GH? Yes... i have 20 other medications I take daily. She said, ok your copay from now on is zero. WHAT?! I asked how that can happen, why would humatrope company offer to do that? She said that the insurance company still pays them monthly so the Patients amount is very small in comparison to the big chunk they get from insurance. So in order to get money from insurance, they let the patient have it for free....

https://copay.humatrope.com/success.cfm?43C4B6AC54F0EFEF8C7F5407DA8F3F4F13AC379A45AFD81D

The questions are:

Are you over 18?
MUST BE YES

Do you live in the USA or Puerro Rico?
MUST BE YES

Do any of your reimbursements for growth hormone medicine come from government entities like Medicare, Medicaid, Tricare, etc? THIS MUST BE NO

I'm so happy I stumbled across this, and I want to share it with all the Cushies out there who suffer from growth hormone deficiency after pituitary tumor(s) and pituitary surgeries.

Looking back at the path you chose

In case you haven't noticed, helping other Cushing's patients wade through the cortisol quagmire is kinda a big deal for me. I choose to spend my free time doing it. Why?

I don't like seeing others struggle. 

I don't like that Cushing's is ruining Cushies' lives. 

I don't like how poorly doctors treat us. 

I detest inefficiency.

So I do my best to take time and answer questions from blog readers and facebook friends.  Tonight, the post was about ketoconazole. The Cushie had gone to the emergency room twice for adrenal insufficiency and adrenal crisis while taking ketoconazole. 

I remembered that I too took ketoconazole. My memory isn't what it used to be, and as such, I set out to search for the word keto on this blog, for so much time has elapsed that my Cushie brain can't hold the details any longer. Fair enough. 

I found the link I wanted (Keto: It Was Fun While It Lasted), but I found the post that proceeded that one by just three days called New Chapter of my Life dated November 3, 2013.  I shared the link for you to review if you are so inclined.

I read through this lost post wondering what was the new chapter of my life. I don't remember any new chapter of my life?! I was floored with emotion as I read my own words recounting the story of my decision to proceed with a bilateral adrenalectomy, which doctors often dissuade us from considering because BLA is the last resort treatment for Cushing's. 

The phrase, "I did everything the medical community asked of me" really hit home. Because don't we all? Aren't Cushies pushed beyond the point we can handle emotionally, mentally, and physically every single day and somehow manage to fight on until the day we reach remission? Does anyone remember my explanation for how statistically rare it is to have Cushing's and yet, we do? Cushies have hit the unlucky jackpot? for Cushing's.

BLA is not easy. It has taken many, many days to get to know my body and what it needs. I do stand tall in the explanation that I made to myself at that time, as it is still one that stands up to reason and emotion. It stands the test of time. 

~*~*~*~*~*~*~

I will post one day soon about the improvements I've experienced since BLA. I will foreshadow that it is difficult to parse out what long term effects are from Cushing's and high cortisol and what I can blame on rheumatoid arthritis. That's for another day.

See you soon, Cushies.

Are Patients Screened for Cushing's before Gastric Bypass?

Do doctors screen obese people before gastric bypass for Cushing's? I doubt you are surprised that docs don't. Our friend Robin explains more on her Cushing's blog, Survive the Journey.

http://survivethejourney.blogspot.com/2009/02/bariatric-surgery-not-answer-for.html?m=1

Could Actress Lauren Ash have Cushing's?!

Tonight I switched over to Hollywood Game Night after watching American Ninja Warrior with the family. My eyes were immediately drawn to an actress I have never seen before. Her name is Lauren Ash and she currently stars on the TV show Superstore.

As soon as the show finished, I took to google images. I went through many photos of Lauren. She is stunningly beautiful with delicate and lovely facial features. I noticed her weight increased over the years. Then, I sent Lauren Ash the following tweet:

After I sent the tweet, I created a few collages. Are my instincts about Cushing's on point?

Photos of Actress Lauren Ash show facial plethora (red cheeks) and moon facies (weight gain in neck), both classic Cushing's symptoms.

We Cushies have always made the difficult decision to approach a person we suspect of Cushing's or leave them alone so we don't embarrass them or us. It has always broken my heart to walk away and risk leaving a person undiagnosed when I held the possible answer. So today, I sent the tweet, and I hope I can help Lauren or anyone else out there who reads this blog.

I'll let you know if I hear back!

Addison's and Surgery

Woo hoo!

"The ADSHG surgical guidelines have been given a makeover! 

The new-look guidelines are available on the website, with print copies in the hospital folder available in the online shop. The core prescribing information remains the same, explaining what level of extra medication and monitoring you will need in the event of most types of surgery or dental work.

New information gives the level of continuous infusion cover recommended, in line with the recently issued guidelines from the Society for Endocrinology. The ADSHG surgical guidelines also now include citations and a list of endorsing clinicians with an interest in adrenal medicine. This includes some past speakers from the ADSHG's medical lecture series. 

Links below to get your copy: 

Free to download

Blogger's direct link: 

http://www.addisons.org.uk/forum/index.php?/files/file/4-adshg-surgical-guidelines/

https://goo.gl/hcoqCa

Online Shop: https://goo.gl/y3BM6p

#AddisonsDisease"

I left this comment on the ADSHG Facebook page. 

Thank you, ADSHG. We Cushing's patients who've undergone bilateral adrenalectomy in the United States ❤️ your materials as do the Cushing's patients who need guidance after pituitary surgery while they are in an adrenally insufficent state. We are very thankful for you and the Addison Clinical Advisory Panel, the group of doctors in the UK who treat adrenal disease. 

In Memorium: Cushies We Lost

MaryO, founder of Cushing's Help online does the solemn job of maintaining the In Memorium list of Cushies we lost (among her many jobs). I am so thankful that she does. 

MaryO wrote, 

"I am so sorry to read that we have lost another Cushie :(  The "In Memory" pages are growing far too quickly. Rest in Peace, Kalyn :("

http://www.cushings-help.com/memoriam.htm

Your Part in Cushing's Awareness

In response to my previous post about Kalyn's death, someone in a Cushing's group said she didn't know Cushing's led to death and that more awareness needs to be done.

I replied:

"I totally agree with you. This shouldn't be happening, but it happens a lot--2-3 times a year THAT WE KNOW OF. Many Cushies never reach out online to find others like them. They never find our safety net... and we lose them as they fall through the cracks.

We have lost MANY to Cushing's in the last decade I have sought diagnosis, treatment, and remission. Many of us have been trying very hard to create awareness.

I created a blog 9 years ago to share my story, medical research, and create a patient presence on the internet at a time horse and dogs had websites dedicated to Cushing's but humans didn't (true story) and before the time we used Facebook or even had cushing's groups.

Some of us have attempted to turn April into Cushing's Awareness Month by blogging every day instead of just posting Cushing's Awareness Day on April 8. Moreover, others won't participate. For unknown or personal reasons, many do not share info and photos about Cushing's and Cushies through FB, when so many have hundreds and thousands of friends connected to us on FB pages. Actually, I know the reason Amy don't share on FB. I suspect that Cushies' fear this would invite further humiliation disbelief, interrogation, and isolation from their "family" and "friends." Not sharing our experiences and horror stories cripples us significantly in our fight for Cushing's awareness.

Sharing another Cushie's FB post or creating your own infographics are such simple and effective ways to get the word out. Maybe 5 people read your message. With thousands of Cushies online, that's leads to thousands of people who learn about Cushing's.

If you want to create awareness, please, do your part.

I invite you to like my FB page Fight Cushing's with Moxie and visit my blog: http://cushingsmoxie.blogspot.com.
Share my posts freely on FB or email.

I chose to create awareness in this way. I encourage anyone to create blogs or even just share FB posts. Please make a commitment to do this. It makes a difference.

It is my strong belief that when every Cushie must does his or her part to create awareness, I mean with persistance and prevention in their heart, we will begin to reduce diagnosis times (some suffer 7-20 years!) as we pull Cushies from near and far into our Cushie safety net.

Once we meet a Cushie who understands us, we never let them go.

PS A keyword search for "death by Cushing's" bring up quite a few articles and blogs that demand reviewing.

Rest In Peace, Kalyn

We lost another Cushie sister today, Kalyn Allen. Her husband posted these updates: 

Yesterday he posted:

Kalyn is in critical condition in the CV-ICU at St. John's in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can't move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support."

"This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.  

My heart breaks reading that. 

Thank you to our Cushie friend Nancy for befriending Kalyn and notifying us of her tragic death. Thank you to Carla, Nancy's niece, for reading Kalyn's story and connecting her to Nancy.  We often say that it takes a Cushie to understand a Cushie. Cushie friends are amazing, supportive, and essential.

Family and friends of Cushies, please stay on high alert. Cushies talk a lot about Cushing's because when we feel compelled to create awareness so others won't suffer needlessly alone, blaming themselves for weight gain and disfigurement.

The rest of her story can be seen im on Kalyn's YouCaring page. Take a few moments to read it. Her Cushing's came on very quickly--diagnosed late 2016'with pituitary surgery (-ies ?) in May 2017. Kalyn's page offers more details. Please consider donating any amount to help this family recover financial from this. 

https://www.youcaring.com/kalynallen-786017

The Cushing's community has mourned too many deaths of friends in the past. This can't keep happening to Cushies. I'm so sorry, Kalyn. I send my condolences to her husband, children, parents, family, and friends. We will always honor you, Kalyn, as one of us. ❤️ 

Recommending my Dallas Endocrinologist

I've been thinking about all the people in Texas who are still looking for a good endo. I highly recommend my current endo, Sasan Mirfahkrhee, assistant professor, UT Southwestern, Dallas, TX.

Office staff is friendly and very responsive to mychart messages and refilling meds.

Dr. Sasan has a calming and reassuring bedside manner.

He always asks me, "How does that sound to you?"

Dr. Sasan is open to all my questions and analyses of labs and symptoms. I spend 30-50 minutes with him. He answers all my very nuanced questions.

This is so refreshing after seeing at least 10 arrogant, think-they-know-it-all endos who brazenly dismissed my Cushing's--cortisol ups and downs (cyclical) and reoccurring--for years.

Dr. Sasan asked me how often I'd like to see him. I feel most comfortable with every three months. He allowed me to set up my appointments for every three months for a year out. There is piece of mind knowing that I can get labs and discuss them with him often. Changing Texas seasons means big dose changes to fludrocortisone, so I find comfort with access.

I highly recommend Dr. Mirfahkrhee.

For those in DFW who have seen other doctors at UTSW and staff said you can't transfer to another endo, Dr. Mirfahkrhee said he has never heard of this. He said he would be happy to see all my Cushie and BLAer friends!

http://profiles.utsouthwestern.edu/profile/118024/sasan-mirfakhraee.html

For those who can't make it to Dallas for your endo appointments, please use this as a checklist of the type of doctor-patient partnership we Cushies need and deserve.

Chronic Opioid Use caused Secondary Adrenal Insufficiency

Cushies often feel pain all over our bodies. Doctors ask where we hurt, and we say 'everywhere.' We hope surgery cures us of all our symptoms, but sometimes it doesn't. Cushies turn to chiropractors, massage therapists, acupuncturists, and pain doctors to relieve the pain. We will do anything to stop that pain that even wakes us as we sleep. 

So imagine my surprise when I see this article today describing "Cushing's Opioid-induced secondary adrenal insufficiency."

😳😑😖😵

As Cushies deal with Cushing's pain after pituitary surgery, now we need to watch for adrenal insufficiency from something that is treating another symptom? 

Give me a break.

"Case Report: An Under-Recognized and Under-Reported Cause of Adrenal Insufficiency" in the International Journal of Case Reports in Medicine, 2014.

Abstract
We report a unique case of potentially life-threatening secondary adrenal insufficiency in a 58- year-old female who was maintained on a high dose fentanyl patch and hydrocodone for many years for chronic back pain. She presented to the emergency room (ER) with severe hypotension, weight loss and fatigue. We suspected hypothalamic-pituitary-adrenal (HPA) axis suppression induced by chronic use of opioids. Subsequently, after appropriate laboratory investigations, she was diagnosed with secondary adrenal insufficiency attributed to chronic opiate use. We discontinued the hydrocodone, decreased the dose of her fentanyl patch and began oral prednisone. The patient responded to treatment and her symptoms were resolved as seen on an outpatient follow up visit three months later. Currently, she is off prednisone and is doing well without demonstrating any symptoms or signs of adrenal insufficiency. Physicians must be aware of this potentially life- threatening side effect of opioid medications and should discourage long term opiate use. To the best of our knowledge, this is the first case report in the United States showing opioid-induced secondary adrenal insufficiency. Keywords: Secondary adrenal insufficiency, Fentanyl patch, Hydrocodone, Hypothalamic-pituitary-adrenal (HPA) axis. 

http://ibimapublishing.com/articles/IJCRM/2014/524907/524907.pdf

Day 5: Cushie Stories -- share your before and after photos

When I first started my blog in June 2009, I went through the painful process of posting photos that showed how Cushing's and high cortisol has changed me.

You can see the original post here.

So much has happened in the years. I will be working to collect some additional before and after photos to depict my life since my Cushing's discovery.

Will you help me help others by making one of yourself, too?

I'm working on a video presentation that will include these photos of Cushing's patients before Cushing's, during Cushing's, and after treatment for Cushing's. If you would like to participate, send your photos to me via email at moxiemelissa (at) gmail.com. I will compile submissions through the end of April. Those I receive before the month's end will be included, so please be sure to send them in soon. I have big plans for this presentation. I will share more in the coming year.

In addition, if you want to write your whole story up and include photos, please send it to me to the same email address. I want to share all kinds of stories from all kinds of Cushies, so please send me something so I can share with our community.

Take care. 

Moxie

Day 4: 'Ugly disease' left Scottish woman with a round face and buffalo hump

Cushing's Awareness Month, day 4.

Syndrome nicknamed 'ugly disease' left Scottish woman with a round face and a 'buffalo hump'

The debilitating Cushing's syndrome causes unsightly and unusual weight gain and zaps sufferers of energy.

BYVIVIENNE AITKEN

• 09:34, 21 MAR 2017
• UPDATED09:43, 21 MAR 2017
• • Daily record

Two years ago Liz Sneddon would cycle 50 miles a day, now she struggles to walk around a supermarket after being struck down with “ugly disease”.

She has Cushing’s syndrome, which has another, equally cruel, nickname – Moon Face.

In September 2015, Liz was caring for her dying mother Mary when she started to feel poorly herself.

http://www.dailyrecord.co.uk/lifestyle/health-fitness/syndrome-nicknamed-ugly-disease-left-10066330

Day 3: Happy Birthday to the Steroid Chemist, Percy Lavon Julian

Have you heard of Percy Lavon Julian and his contributions to the Cushing's and Addison's community?

"The grandson of Alabama slaves, Percy Lavon Julian met with every possible barrier in a deeply segregated America. He was a man of genius, devotion, and determination. As a black man he was also an outsider, fighting to make a place for himself in a profession and country divided by bigotry—a man who would eventually find freedom in the laboratory. By the time of his death, Julian had risen to the highest levels of scientific and personal achievement, overcoming countless obstacles to become a world-class scientist, a self-made millionaire, and a civil-rights pioneer." ~PBS website

So you may never heard of him, but Google images shows that we may be the among the few that don't know about this amazing man is.

The grandson of slaves, Percy Lavon Julian overcame racial barriers to achieve scientific, business, and personal success.

I owe this post to my Cushie and BLA friend Trisha, who brought PLJ to my attention. In her words:

"This doctor is almost as important to people with Cushings as Dr. Harvey Cushing and I just learned about him today. 

Percy Lavon Julian (April 11, 1899 – April 19, 1975) was an American research chemist and a pioneer in the chemical synthesis of medicinal drugs from plants.[1] He was the first to synthesize the natural product physostigmine, and a pioneer in the industrial large-scale chemical synthesis of the human hormones progesterone and testosterone from plant sterols such as stigmasterol and sitosterol. His work laid the foundation for the steroid drug industry's production of cortisone, other corticosteroids, and birth control pills.[2][3][4][5]

He later started his own company to synthesize steroid intermediates from the Mexican wild yam. His work helped greatly reduce the cost of steroid intermediates to large multinational pharmaceutical companies, helping to significantly expand the use of several important drugs.[6][7]""

There are countless websites extolling praise on Percy Lavon Julian now, but back then, he was denied tenure despite his accomplishments because of his race.

• PBS shows timeline of Julian's life
• Watch PBS show or read transcript
• Chemical Heritage Foundation calls PLJ a "steroid chemist"
• Biography.com's profile
• American Chemical Society's profile

This was only on the first page of the google results. There are pages and pages more. I mean it. 

• For those of you in education, how about teaching a lesson on Percy Lavon Julian?
• For the chemists and science folks, want to build a steroid?
• Still can't believe you don't know about Percy Lavon Julian and want to share with friends and family? Looking for a role model for the children of Cushies and Addies or your own kids?Buy the PBS DVD for $12.99 here.

I never heard of Percy Lavon Julian before today, but he is the reason Cushies survive after pituitary surgery and the reason BLAers like me can finally be free of excess cortisol. Even though Harvey Cushing discovered the disease and surgery for it, Percy Lavon Julian is a hero for all Cushies and Addies. As such, I will celebrate him every April 11th going forward. I hope all of us will do the same.

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."

Day 1: Blogging with the Cushies, featuring Alicia and The EPIC Foundation

Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing's patients and others with invisible diseases. In 2017, Karen debuted EPIC. 

Please take a moment to read about EPIC Together's Person of the Month, Alicia Held. 

Alicia had battled Cushing's for a long time but remains tenacious, positive, and helpful, sporting with her signature smile in many personal photos she shares with the EPIC Together readers. 

Do you see yourself in Alicia's story?

http://www.epictogether.org/alicia-held

While you are there, spend some time reading about the work of The EPIC Together Foundation and become a subscribing member. 

Day 1: Blogging with the Cushies, featuring MaryO

MaryO kicks off Cushing's Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven't been tested this way. 

"A Faster Way to Diagnose Cushing's" (National Institute for Health, February 2017)

https://cushieblog.com/2017/04/01/a-faster-way-to-diagnose-cushings-syndrome/ 

Day 1: BIG news month. Don't miss it.

Hey hey, what do you say?
Cushing's Awareness Month starts today. 
H O O R A Y !

Am I cutting it close or what? 11:55 pm on day 1 of the blogging challenge. 

I want to tell you that my life has undergone great change in the past year.  I hope you will visit us often. Will this blog reach one million page views this month? At 922,000, we don't have far to go. 

For 30 days in April, I will be blogging about:

~  My 10 year anniversary with Cushing's!! How did I survive

~  A Decade to Wellness: Moxie's full Cushing's story all in one post + never before seen personal photos

~  All things Cushing's: what the docs should know. New journal articles about hypercortisolemia, panhypopituitary, adrenal insufficiency, and adrenal crisis in the medical literature 

~  Training Tux. Follow along to see how Moxie trains our service dog to detect cortisol for me and blood sugar for my husband plus many basic dog commands without ever having owned a dog before. This gets comical. 

~  My new rheumatoid arthritis diagnosis and how high cortisol sets many Cushies up for autoimmune disease after remission. Bonus: are rheumys better than endos?

~  Prednisolone: my success with a relatively unknown cortisol replacement 

~  Weight loss 3 years after BLA: it is finally happening. You'll never guess that our old, ubiquitous nemesis Metformin is now the hero

~ Growth hormone insufficiency landmines: why are endos hesitant to prescribe this after Cushing's pituitary surgery and how to deal with predictable delays and deliberate stalling by the insurance companies

~  Korlym: how doctors are prescribing it in 2017 vs. 2013 when it was first approved by FDA (hint: follow the money). Disclaimer: I own stock in Corcept Therapeutics. See full disclaimer on the side bar to the right).

~  Cushies make headlines: Follow up on the Cushies we've seen in the news

~  Patient spotlight in Cushing's right before your eyes. See the many faces of Cushing's in patients' before and after photos 

~  Life after BLA: Words of Wisdom from Cushies about controlling cortisol, taking medicine every day, and living with the ever-present threat of adrenal insufficiency and adrenal crisis. Is it better or worse than endos threaten it will be?

*~*~*~*~*~*~*~*~*~*~*~

Be sure to like my new Facebook page: Fight Cushing's with Moxie on Facebook. 

Forward those posts to your friends, family, and community to help spread awareness for Cushing's. 

SUPPORT CUSHING'S BLOGGERS ALL APRIL by forwarding their blog posts to your FB peeps. Let's make it our goal to make them see the word Cushing's twice a day for 30 days!  We can do it, everybody!

Thanks for stopping by. See y'all soon.
~  Moxie Melissa