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Nicole, Undiagnosed Bio

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My name is Nicole, currently 19 years old. I’m a student at The Juilliard School in New York studying Dance. I don’t know why it’s taken me so long to reach out to this community, I have certainly been stalking and researching this disease for months now… I guess I’m ready now to share my own story, especially since I feel more hopeless and alone than ever before.

July 2015— It all started about two years ago. I was only 17 and very much in peak-performance shape. I looked and felt like an athlete training to be a professional ballet dancer. I prided myself for my toned body, which is very very important in the dance world. I think I weighed about 103 lbs at a height of 5’4″.

But that summer I noticed it became increasingly difficult for me to fall sleep at night. I would sometimes stay up until 3 or 4 AM when I knew I had to be up at 6 or 7 AM for a full 8 hour day of dancing. I started to stress eat a lot as well and by the end of summer I blamed myself when I had gained back all the weight I had worked to lose the previous year, plus some. I think I was about 114 lbs by the end of August.

Around this time I also sought out a Naturopathic doctor for the first time at the suggestion from a friend to help me treat an underlying anxiety disorder. I was given supplements, and for a while my health improved considerably. I felt more calm and sane than ever before in my entire life. But that didn’t last long. I continued to steadily gain weight during my senior year, always going on extreme fad diets to try to maintain. Sometimes it worked, sometimes not.

March 2016– By the time Spring rolled around I was really starting to notice a difference in my appearance. My face had begun to swell and I began to wonder if maybe my weight was out of my control. Maybe there was an explanation for my struggles and failed efforts. So I began researching hypothyroidism, since it runs in my family, and I went to my primary care doctor to ask for the first tests. Little did I know this would be the beginning of a long and defeating marathon.

My doctor initially treated me like I was crazy. Saying that if anything I was still underweight and that I should be concerned about my primary amenorrhea (I had still never had a period). But he did the tests and the results came back suggesting hyperthyroidism. I was confused because all my symptoms suggested otherwise. Nevertheless I was shipped off to an endocrinologist who was of little help to me throughout the summer while I continued to dance and went away for a summer intensive in Chicago.

June 2016– While in Chicago my weight just ballooned even more. I admit I did gain muscle but that was thanks to the rigorous amount of training I was doing at the time. I definitely didn’t look right though. My muscles were buried under a layer of fat, no tone was visible, and my puffy face made me look like a stranger to friends when I returned home. I tried various thyroid replacement hormones at low doses, desperate to get my body back.

August 2016– I had returned to my Naturopath in the hopes she could finally diagnose me with hypothyroidism. She did, and in fact she discovered I have Hashimoto’s, which explained the fluctuating levels. She put me on NaturThroid before saying goodbye as I departed for my Freshman year of college at The Juilliard School.

September 2016– My health improved a short while. I lost some of the puffiness on my face, dropped some weight, but settled around 117 lbs. This only lasted about a month.

October 2016– By October things turned for the worst. I felt only weaker the more I pushed myself each day. My muscles weren’t allowing me to dance at the same capacity as I once had, I was embarrassed by my short comings, especially being surrounded by so many talented individuals. My weight started rapidly increasing now. I regained the puffiness around my face and neck, and my weight went from 117 to 126 in a matter of a month.

I was referred to a Reproductive Endocrinologist who thought I had PCOS and put me on metformin. To her credit, I did fit the profile. I complained of rapid weight gain, I had slightly elevated testosterone, and I had a few small cysts on my ovaries. But there were also things that didn’t fit the bill. Like my apparent lack of Estrogen, which is usually elevated in PCOS. And that I had never had a period before. I also showed no signs of pre-diabetes.

January 2017– After winter break I really could no longer put a stop to my weight gain. No matter what, it just went up. I tried cutting carbs, sugar, and calories to below 1,200 a day, all while dancing 6-8 hours a day and my weight only went up.
Metformin didn’t work. Repro. Endo. put me on estrogen and progesterone for a while, but I stopped seeing her eventually because she didn’t listen to me and ignored my qualms about weight.

I also grew very very depressed around this time and began to wonder if this was the end of my dance career. I was starting to look like a joke in classes. I mourned my body. I didn’t recognize myself in the mirror.

May 2017– After months of research I began to wonder if I might have Cushing’s disease. I had the stretch marks on my butt and thighs, the filling in of fat around the collar bone, neck and jawline. Rapid weight gain, fatigue, depression, angry outbursts, and flushed cheeks. I do not have central obesity, but my weight has always tended to go to my butt and thighs. Though for the first time ever I begin to form a muffin top and fat on my arms. Cellulite appeared everywhere when I stretched my skin even a little bit, very odd to see cellulite on your knees! I had swollen legs too.
I now weighed 135+ lbs.

June 2017– When I got home for summer break my mom and I saw Neuro Endocrinologist Dr. Kevin Yuen at Swedish Pituitary Center. He listens to me, the first doctor to really listen! And he began testing.
Four 24/hr urine, 4 midnight salivary cortisol, 1 dexamethasone suppression test, 1 dex-CRH test, 1 Pituitary MRI.

July 2017– (current weight = 147 lbs) After a visit with Dr. Yuen and weeks of speculation he concludes there is only a 50/50 chance I have Cushing’s. Test results are as follows:
-2 mildly elevated 24/hr urines
-2 normal 24/hr urines
-3 elevated midnight salivary cortisols
-1 completely normal midnight salivary cortisol
-normal response (suppressed) after low dose dexamethasone
-normal response to Dex-CRH
-normal MRI

I’m disappointed to say the least that there is not more resounding evidence that I have this disease. I feel so certain that I have it. My body and mind are changing so rapidly I just want to cry every day. It’s so bad I don’t think I can return to school in the fall. I may have to take a year off of dance if I don’t get my body back in shape by the fall. And a year off of training could ruin me!!

Dr. Yuen suggests doing a hospital stay at Swedish to conduct further testing, particularly midnight serum cortisol, to see if more positive results might outweigh the normal results. I guess he wonders if I did something to mess up the cortisol response in some of the tests, though I don’t see how I could have! I’ve barely done anything this summer, definitely nothing exciting. I’m home-bound because I feel so depressed.

I don’t go to ballet classes anymore because it’s too painful to see myself in the mirror and try to dance in a fat suit. None of my clothes fit anymore. I just don’t feel like a young attractive woman like I used to. Not to mention my energy is out the window.

I haven’t quite given up yet! I eat a very limited paleo diet that omits grains and sugar (except those naturally occurring). I try to swim at least every other day and keep up with my pilates and stretching. It’s not the same though.

I might give up if after the hospital stay, the tests come back normal and I’m told I do not have Cushing’s, when I don’t see how it could be anything else!

I just want my life back.

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Correy D (Cushie Correy), Pituitary Bio

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pituitary-location
In the beginning:

This journey started long before I knew it did. I was healthy for the first 27 years of my life. Around 27 or 28 I started having problems. It started with high blood pressure. No problem, that runs in the family. Medication will solve that. Around 30 there was something more strange going on. I still produced milk even though my youngest was 5. My doctor sent me in for a galactogram (a mammogram with dye injected in my glands). It came back normal. My breast and mammary glands were fine.

Over the next few years came depression, weight gain regardless of diet and exercise, and random muscle strains. My doctor said to try a little harder and eat a little better. I threw my hands up in the air. I had already tried everything and still I was gaining. This went on from 2009 to about June of this year.

In June of 2013 I broke a rib when I was trying to crack my back. June of 2014 I broke another one on the opposite side when I was coughing. Finally, my doctor took notice. All the sudden my previous diagnosis were not individual issues, but symptoms of a bigger problem. Cushing’s disease has a laundry list of symptoms and I had almost all of them. I had already mentioned lactation, high blood pressure, depression, weight gain and brittle bones. I also had other symptoms I was not even aware of. My face had become round and red, most of my weight accumulated in my torso, there was a pronounced fat hump on my upper back, there were purple marks on my belly (striae) which I had thought were stretch marks, my face had become fuzzy, and I hadn’t had a period in at least 7 years.

The symptoms weren’t enough for a diagnosis. My doctor orders labs for hormone levels, cortisol levels, and I don’t know what else (about 5 blood vials worth). These came back with high cortisol levels and enough other oddities that I was referred on to an endocrinologist. This doctor did the first panel of tests over and added a few more. It seemed that everyone knew what it was but no one wanted to be the one to diagnose Cushing’s.

Now there are only a couple of things that can cause Cushing’s. The first is steroid abuse…ummm, no. The second is a tumor either on the pituitary gland or the adrenal gland. These marvelous tests determined that it was the pituitary version because if it was adrenal only cortisol would have been effected. The pituitary gland controls a myriad of chemicals in your body and all my levels were off.

OK, so they were convinced it was Cushing’s, now we just had to see the tumor to prove it…MRI time. I don’t know if you have ever had an MRI but I despise them. Reasons, I am claustrophobic and very large. It was a horrible experience resulting in fuzzy images, but they were clear enough to show a tumor sitting square on my pituitary gland. For those who have not looked it up by now the pituitary is on the front (face) side of your brain, settled in between the major artery and vein in your head, right behind your eye balls and sinus cavity. This is not a convenient place to have a tumor.

The endocrinologist then referred me to a neurosurgeon. The local surgeon referred my case to Mayo Clinic of Minnesota. So, we are talking tests and waiting from June through September. I was told to report to Mayo September 23rd. I was given the impression I would meet the doc and be scheduled for surgery Wednesday or Thursday. This was not so.

I brought a team with me: my sister, Amanda and her friend Athena and my bestie Lauren. We first met with the Mayo endocrinologist, Dr. Abboud. He decided he wanted to run his own tests there before there would be a surgery. He did blood test, urine tests, even saliva tests. In the meantime, I met the neurosurgeon up there, Dr. Von Gompel. He explained the surgery and scheduled it for September 30th 2014.

Here are my Facebook posts from this time:

9/23 First Mayo Update:

I met with Dr. Charles Abboud, Endocrinologist and we did an in-depth evaluation of my symptoms, physical characteristics, and medical history. There are so many things that I have considered normal for me over the past 8 years that are related to this disease. It’s nutso pants.

Anyways, it was determined before surgery they want to do more scans and testing because although it is likely the pituitary tumor is the cause, I may have other contributing tumors elsewhere. This means I will likely be up here longer than anticipated with surgery delayed for a minimum of 3 days to get results on this battery of testing. More to follow…

9/23 Second Mayo Update:

I have now received the schedule for the week. I will have more scans to be sure there are no tumors elsewhere. I will also have various test on bodily fluids, secretions, swabbings and their reactions to different medications throughout the week.

I met with the neurosurgeon, Dr. Jamie Van Gompel this afternoon. This was the appointment in which they gave me the assessment of what the surgery would entail for my case specifically, risks, odds of complications and most importantly a date. The trans sphenoidal endoscopic surgery (I feel so smart) will be next Tuesday now. Until then more waiting…and testing…and more waiting.

Sept. 24

Yesterday was information overload. Between consultations and running floors 1-19 of the clinic multiple times then making extended hotel arrangements and Walgreen’s runs I was exhausted x12.

~~~~~~~~~~~~~~~~~~~~~~

On to today: I am finally closing out day one of excessive testing. Upon arrival at the clinic I turned in samples of #’s 1 and 2 and saliva (all separate, thank gods). Due to my claustrophobia, we opted for wheelchair when using the elevators (I had collapsed yesterday when one got too full on me.)

At 8 am there were 6 vials of blood drawn, 9:30 a chest x-ray, then a info session for my sleep study tonight, next a midsection CT scan with contrast (holy warm sauce) and finally another blood draw for my PM cortisol levels. Whew…donsies!!!

Sept 24

I have difficulty sleeping without a fan. I have not slept well the past couple of nights because of lack of air movement. I was all ready to run to Target and buy one when Lauren was like, I’ll just call the front desk and see if they have them. This is me being used to self-reliance vs actual customer service. My sleep study is saved. Now we’ll see if I legitimately stop breathing.

Sept 26

Friday update:

The past couple of days have been kind of slow compared to the first couple here. Yesterday completed my sleep study and CT looking for additional Timons, results still pending. Today I had a bone density test. This shit gave me osteoporosis. That’s why my ribs kept breaking. Over the weekend, I’ll have more ‘sample collections’ and blood draws and attempt to not be bored to death in between.

On the plus side the weather has been gorgeous, I have had muchos girl/sissy time, and in a town like this survival stories abound.

Have a GREAT weekend!!

Sept 29

Case of the Mayo Mondays:

Today began with another blood test. This one, the lab tech had to get an IV which is generally not an issue for me. This time the guy blew out two veins. The 3rd try he “kind of” a clear one in my hand. Through this he had to do medication injections and blood draws at 15 minute intervals for an hour and a half. This resulted in knots in 3 places where veins used to reside.

Next up was a head CT to map my brain. This was interesting to me. I got another IV (a clear one this time) for contrast dye, nodes stuck all over my face and head, and run through a CT scanner. From this they will make a map of the blood vessels through my head to help the surgeon navigate tomorrow. They removed the nodes but left dots in permanent marker and tape over them so they do not get wiped off before tomorrow. It will be interesting walking around town tonight.

I am done with appointments for the day. Whoop!

The good news of the day: The chest CT showed “multiple healing rib fractures” but no more Timones. Yay!!

At 8:30 tonight I will call an automated system, enter my patient ID, and find out what time to report for duty tomorrow. I must find distraction. I am starting to get anxious. Can it be next week already?

Sept 29 Post 2

Reporting for duty at 5:45 am central.

Tomorrow determines if I get to continue to eat vegetables or become one…

Sept 30 I registered at St. Mary’s Hospital and got settled in. Surgery began at 9:25. I was done around 13:00.

Oct 1

My first post-surgery post

Timone is gone. I am tired.

Oct 2

Hey all, got behind on the updates because a lot has changed very quickly. I have “complications”. Please keep positive energy pointed this direction. I may be up here for a while now.later Oct 2

If medical stuff makes you icky, keep scrolling.

So here’s the run down after surgery. The tumor removal itself went well. They believe they got the whole thing without much damage to the pituitary gland. The two issues that remain are post-surgery my cerebral spinal fluid (csf) sprung a leak and the Cushing’s disease that the tumor caused kicked in.

A few hours after surgery I started dripping/ running clear “snot” from my nose. It only happened when I was upright or leaned forward. The fluid was tested and determined to be csf. Now a person cannot just go around leaking brain juice so action had to be taken. The doctors put in a lumbar puncture and are draining spinal fluid every two hours. This will take the pressure off my head and give it a chance to heal. This means I am here at least till Sunday. If this does not work, they must go back in and manually patch the leak.

The Cushing disease also kicked in full effect today. That meant today with the tumor gone the excess amounts of cortisol my body was used to stopped and I crashed. This would be like a meth head going cold turkey. This morning was spent trying to find the right steroid/ dose to balance me back out. With luck, I will be able to wean off these eventually.

As they steroids are currently wearing off again I’m going to sleep because I don’t really have a choice. NITE ALL!!!

Oct 6

So I know it’s been a while….

The day after my last update they put in a lumbar puncture and connected a drain to it. 10 ml of csf was drained every 2 hours for 2 days. This took the pressure off my brain= no more leakage= time to heal. I have also been sleeping almost nonstop. It seems to have worked, no more nose leakage. They drained 30 ml this morning and will do one more drain tomorrow AM and if no more leakage I will get all my departing instructions and GET TO LEAVE.

Next challenge: re-balancing my chemical physiology.

Oct 7

This morning I woke up in Minnesota, still in the hospital. They stole more blood, drained more csf, and pulled that thing out of my back. Best news of the day: After they pulled out the drain my nose did not start leaking again. This meant I was clear to leave…woot!

Paperwork, discharge instructions, shower because ewww hospital, prescriptions, freedom. Oh no, not yet, doctor appointment with my favorite endocrinologist of all time, Dr. Abboud. So, it took a while but home we came.

I have a fuzzy head but full heart. Thank you all so much for your kind words.

Home at last and then the real Cushing’s journey began.

Home Sweet What?!?!?

I came home from Mayo October 7. Home to me may be considered a madhouse to others. My house contains my children (17-year-old girl, 10-year-old boy), my sister, 3 dogs, 4 cats, and 3 turtles. Upstairs contains my dittos and 2 of the cats; the basement homes my sister, her two dogs, and the other 2 cats; and the main level is myself, my dog (Toby), and the stupid turtles. I was happy to be going home to my madhouse.

Before the surgery I had done quite a bit of research about the symptoms of Cushing’s, the causes, the surgery itself. I had not, however researched much about Cushing’s recovery. While still in the hospital I remember sleeping, in between all the intermittent blood draws, vitals checks, and med administering. There was not much else. Once home I was initially just concerned with watching for brain juice leakage. I was not prepared for reality.

Read reality:

http://csrf.net/doctors-articles/recovery/recovery-from-cushings-and-coping-with-recovery/

My reality also included my madhouse. For as full as my house is I spend most of my days alone. My sis works nights so she is sleeping during my waking hours and gone overnight, the dittos are in school and the girl works nights. The cats are on their respective floors. It’s just me and my Toby since the turtles are not for me. When I’m awake, I look around and see all the things I could be doing if I was mobile. The floors need swept, dishes need done, general tidying and dusting required. It’s not that these things never get done but they could be done faster if I were able.

I have now been home a month. Physically, I was more ok when I got home than now. At that point I was still tapering down prednisone. I was still sleeping quite a bit, especially after dropping my dosage, but by the end of the week I was moving around more. After a few weeks, the tapering was done and I crashed once again. I am sleeping till the afternoon. I am weak to the point that moving from room to room is exercise, painful exercise. I stopped taking the prescribed pain killers so I am depending on Tylenol. Tylenol sucks ass. I also still lose words. Often, I cannot complete a sentence. I know exactly what needs to be said but the term, phrase, or name is completely gone. In my “before Cushing’s life” I was pretty flipping eloquent so this is extremely frustrating. To be honest the whole thing is frustrating. I am a strong intelligent independent woman reduced to incapable and not so eloquent blob.

A series of unfortunate events…the sequel.

I suppose I should start at the end of my last post which was flippin January for gods sake. I don’t know why I felt the need to stop writing when things started getting bad again. Documenting my recovery was so much more positive than writing about a relapse but now it’s time to catch up. Cushing’s is a journey with highs and lows. Jump on the coaster with me.

At the end of January I was on the way over a big hill on the coaster. I was doing water aerobics, getting more mobile, working with dogs again. I had my appointment with the local endo and she was dismissive. She basically said the tumor was gone and I should be losing weight faster. This is the exact reason that not just any endo should deal with Cushing’s patients. They don’t get it. Removing the tumor is only step one. Next is re-balancing hormones, then dealing with all the havoc Cushing’s has left behind. My January cortisol labs had been normal, as in recovered norm which was a recovery from the crash post op 0. It is not usual to be at normal range so soon after weaning of prednisone, but we took it for good news anyways.

By mid Feb I was starting to get nervous. I was starting to feel things, previous symptom kind of things. My skin started to break out again, I had headaches again, and I started to gain weight to spite moving more than I had in over a year. I had a follow-up MRI in February. There was the post op variances they expected and then, there it was, a new 2 mm regrowth. FML!

I did not feel good about continuing with the local endo. I could not shake the feeling she had blown me off as just another fat hypochondriac. My GP referred me down to U of I where I met Dr. Christina Ogrin. Our first appointment she took a whole afternoon to listen to my story. She told me she had never dealt with Cushing’s before but she wanted to help and she would work with her colleagues and research to see where we needed to go from if the tests confirmed a recurrence. We repeated the cortisol and other hormone tests that had just been performed in January and there was the confirmation. My cortisol was back above normal range. Dr. Ogrin contacted Dr. Abboud, my Mayo endo, to get his take on the situation. After consulting the U of I team, Dr. Abboud, and her own research, Dr. Ogrin laid out the options.

1. Operate again

2. Go on ketoconazole and get radiation

3. Try a newer medication (Signifor) to counter the cortisol and possibly shrink the tumor.

As I was just coming off of my first trans sphenoidal adenectomy, I was not eager to jump on that again. I had heard horrible things about ketoconazole so that was not a happy thought. Signifor sounded like my best option.

There were many baseline tests that had to be performed to start this process. We tested cortisol levels from blood, pee, and spit. We did a new MRI (April) which showed Marty* had already grown. I had an EKG and ultrasound of my gallbladder because Signifor can affected the heart and cause gallstones. When we did the gallbladder ultrasound there were already about 9 good sized stones present. At that point it was decided I should have it removed prior to starting the medication. Signifor also causes an increase in blood sugar and since mine was already borderline high they started me on Metformin. They tell me my gallbladder has to come out, a preventative measure since the odds if it causing problems if it stayed were close to 100%. Sweet. Here I am taking it all in stride. If that’s the next step, then that is what we will do. My coworkers were supportive and told me to put my health first. I would not lose my job. Woot!

May came in like a whirlwind. I had a pre-op appointment with general surgery to set up my gallbladder removal. A couple of days after that I was in my garage leaving for work when I lost my balance and fell forward catching myself with my arms outstretched. My balance, muscles, and bone strength had all taken a hit from the Cushing’s so my arm snapped. The break was bad, right above the elbow, there was one clean break and another longer break up the bone. One ambulance ride and many pain pills later I was admitted at St. Luke’s and informed they would have to operate. I am now the proud owner of hardware in my arm.

At this point I was already scheduled for my Laparoscopic Gallbladder Removal (Cholecystectomy) so in the beginning of June we went ahead and did that too. What is supposed to be a simple surgery went sideways when they nicked my liver. I had to have a icky drain for the bleeding. A couple weeks later I went to have the drain removed and everything looked fine. That night I starting to get sick. My temp went up, I started vomiting and my stomach hurt so much I thought I would pass out which would have been a blessing because I wanted to sleep till it was over but I could not due to the pain. I know, run on sentence, but it was a run-on couple of days. My stubborn behind would not go to the doctor because I had just been and everything was ok. Or not…

I ended up in the ER again. They transported me from St Luke’s to U of I because my liver levels were ridiculous high and the local hospital did not want to deal with my issues. Once at the U, I was admitted, poked, and prodded. By the end it was determined that I was passing a gallstone that had gotten stuck on the wrong side of the clip when they took my gallbladder. This can only happen in my world. Who passes a gallstone when they no longer have a gallbladder? This girl.

This took us to July. Dr. Ogrin was out of the country. She wanted me to take the month to recover and get used to the Metformin. We would meet when she returned to start the Signifor. And so we did. Signifor is very expensive as it is rare and there are no generics for it. Dr. Ogrin successfully fought the insurance company because there is no other FDA approved medication for pituitary Cushing’s. The first month I was on it there was little relief. My brain fog was back along with my other returned symptoms and now I also had extreme digestive issues. These were three part. Gallbladder removal itself affects digestion. The Metformin is known to cause such problems. Now the Signifor injections themselves cause nausea. After a month, I got a 2-week reprieve because the insurance company denied my renewal so now we are starting over. I will retest cortisol levels in November to see if the Signifor is doing anything aside from making me nauseous.

I have also spoken with the radiology oncology department at U of I. They have reviewed my case and I am awaiting word on whether they would recommend a single dose (gamma knife) radiation or a five-week treatment. Either way I would continue on the Signifor because the radiation results can take up to a year to show.

There you have it. The last nine months in 1500 words ish. Some have babies in 9 months. Not I, I have a series of unfortunate events.

*I named Timone’s sequel Marty for a few reasons. Marty is the zebra in Madagascar. Zebras are the animal mascot for Cushing’s because doctors have this awesome mantra that is drilled into them when they are in medical school, “If you hear hoof beats, think horses.” Well Cushing’s is one of the most misdiagnosed illnesses because our symptoms may be hoof beats but zebras have hooves too. Sorry for the tangent but it is important to the Marty explanation. In Madagascar 3, Marty has a moment that mimics the overactive distractedness that a Cushie brain knows so well. He sings and dances for his new circus friends. “Afro circus, afro circus, polka-dot, polka-dot, afro!”

https://www.youtube.com/watch?v=aZYFqle7GvA (the submitted video is unavailable)

Radiation Oncology- Dr Smith

I got a call back from Dr. Smith today. University of Iowa is a teaching hospital. As such, they have interdisciplinary case meetings on Tuesdays to discuss the more complicated patients coming through the U. It is a very “5 heads are better than one” approach which I appreciate. In my case, they discussed radiation vs Trans sphenoidal adenectomy. Radiology put the case up and although it is a viable option neurosurgery believes there is a better chance for better quality of life with their option. Each specialty believes strongly in their course of action. Of course, it is all up to me.

The risk of gamma knife radiation would be hypopituitarism (disorder in which your pituitary gland fails to produce one or more of its hormones) Ironically the symptoms of hypopituitarism are like what I am already experiencing with Cushing’s. I could end up on replacement therapies for the rest of my life.

The drawbacks of the surgery are the surgery itself is traumatic, the recovery is difficult, and the failure rate is high. My first surgery left me bedridden for a couple of months. I could not afford to take that much time off again. At this point taking a day off impacts but a month…impossible.

I am torn but I did agree to meet with the neurosurgeon before going ahead with the radiation treatment. I am still processing. Neither is a very high success rate and both have negatives. The drug therapy I am on is a temporary situation. The longest it has been reported to work is 5 years. Cushing’s has a high mortality rate with no intervention. I am only 36 and have an 11-year-old son. Five years is not enough.

What do you do when all options available are just buying time?

Neurosurgery- Dr Greenlee

Today I had my neurosurgery appointment. The surgeon came in, looked at my scans and reviewed my history. This is the same doctor who had been so sure surgery would be better than radiation. He told me this time the tumor is wrapped around my carotid artery. He told me there would only be a 60% “cure rate” by going through that horrendous surgery again. Along with a higher fail rate, it would also be much higher risk of complications or death due to the position of the tumor. Looks like radiation is in my future.

I do have a follow up appointment with my endocrinologist, Dr Ogrin coming up. We will be checking my cortisol (24-hour urine Yay!) to see if the Signifor injections are having any effect. We shall see.

Testing testing…1 2 3

Every Cushie knows the frustration of testing. Cushing’s is one of those really hard to prove diseases. Our hormone levels are tested at every junction of diagnosis and treatment. Cortisol is the main hormone tested for. Cushing’s can affect several chemicals but cortisol is the steroid that causes the most damage. There are several ways cortisol is tested. Saliva- you suck on a cotton swab in between 11pm and midnight and send it off to the lab. Blood- soooo many blood tests, AM cortisol, PM cortisol, and dex suppression. And of course, the pee- most often 24 hour urine.

Every result comes with mixes emotions. When testing for a diagnosis, if you get abnormal results you are happy that you are not crazy, there really is something wrong. So many people are told there is nothing wrong with them for so long, they start to actually feel crazy. When you are testing during treatment and get a bad result, then comes the fear. What next? What does this mean for my treatment options? Am I out of options? This fear is only slightly amplified by the anxiety that comes along as a wonderful side effect of the disease itself.

Results time:

Cortisol, Urine Free – per 24 h Result

175.5 Normal Range

<=45.0 Measure

ug/d

Last week I did a 24-hour urine test. This is seriously collecting every drip for 24 hours, the results of which I got today. Considering the recent consulting appointments, I’m once again not sure which direction to go. The test show my cortisol is still high, not as high as it had been in the past. My last 24 hour was May 10th and 263.4 ug/d. At that rate 175.5 looks pretty good. The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?

More questions than answers when test results arrive. This makes me long for the days of pass/fail pregnancy tests. At least then there was a definite answer and knowledge of options to follow.

Radio Roller Coaster

“The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?”

These were the questions I had after receiving my last test results. My 24-hour urine cortisol had still been high. I had a follow up with Dr. Ogrin (endo). She was quite encouraged. My results were still above normal range but were much lower than my pre-medicated levels and my blood cortisol and ACTH were back down to normal range. This meant I got to stay on the Signifor and radiation was still a go.

FF to yesterday. I went to meet with Dr. Smith’s office for my pre-radio-surgery patient education and MRI. We went through the procedure and the nurse stepped out to grab whoever was taking me down to MRI. No one came back…we waited for just over an hour. I have never waited at this office before so I knew it was not good. Finally Dr. Smith comes in. I actually hadn’t expected to see him yesterday so my suspicions were confirmed. He sat down and told me my weight disqualified me from the gamma knife radiation. My options now are the full 6-week course of radiation or the trans sphenoidal adenectomy. The same surgery that I was told there was only a 60% change of success. To me, this is just not a viable option.

Every time I think there is a plan, it gets squashed. Have you gotten whiplash from my roller coaster yet? This disease got so far gone that I am too fat to be treated. I would not wish Cushing’s on my worst enemy. This thing might just kill me. All of my systems are stressed from the extra weight. My blood pressure cannot be regulated. Signifor has made me officially diabetic. Grrrrrrrrrrr!!!!!!!!!!

Reverse: Part way through this post Dr. Smith called. After discussing my case with his colleagues, he was reminded they were upgrading one of the radio surgery stations and it would no longer have the weight restrictions. I’ll have to wait till mid-December but Gamma Knife is still a possibility. This is truly good news because the success rate with radio surgery is so much higher than standard ration treatment.

Every disappointment is just a moment in time. You stay because you get the counter moment eventually. BUT if my life were a movie, I wouldn’t watch it, I’m just sayin…

Signifor

Signifor is the supposed miracle treatment for pituitary Cushing’s, the only drug officially approved to treat the disease. When my first surgery failed, I was not really wanting to get right into another one, Dr. Ogrin did some research and jumped on this as an option for me. My endo is not a Cushing’s specialist but she is very enthusiastic and willing to put in the work so her excitement was infectious (haha). There were a couple of hurdles to overcome before actually starting treatment. The medication is a twice daily injection. The cost is approximately 12,000 per month. In order to get the insurance company to cover it we had to do many preliminary tests and baselines for future tracking. There were the normal cortisol level tests (blood, urine, and saliva), EEG, and ultrasound of my gallbladder as Signifor often caused gallstones. During the ultrasound, it was found that I already had about a dozen gallstones. The stones were not irritated but since they were only going to get worse it was decided to remove the gallbladder proactively. OK, so about two months later we were ready to go.

I started the injections knowing that the major side effect would be the increase of blood sugar generally causing diabetes so when my blood sugar went up it wasn’t a surprise. As big as I am, I had never actually crossed the line to diabetic before. We started Metformin which made me sick as a dog. I still stayed on it for almost 2 months. It kept my blood sugar in normal range but I basically lived in the bathroom. YUCK! Now we are trying a Glipizide. It has been ok but I take it with food and my spikes are post injection so my sugars never stay level. The other side effects nausea and hair loss, I can live with I guess. Not a fan of seeing my own scalp but due to overheating I can’t do hats.

Also, the insurance will only pay for the drug 3 months at a time and then require proof it is working before they will agree to the next 3. I was really nervous because I really didn’t know if it was working. Some of my initial symptoms were easing up but nothing was cured and I was still gaining weight. Time for test again. Blood, urine, and saliva all told the same tale. My cortisol was lower than initial levels. It had been cut in half but was still well above “normal” range. I just got word that it was enough for insurance to approve to continue treatment. Woo HOO!

This is not a long term solution. It’s a treatment not a cure. It only works as long as I am able to get the injections and the side effects are hard on the body. About 20 minutes after every shot I get waves of nausea. No way around that one. I am now diabetic which may or may not go away. The expense is also not realistic long term. I currently have Medicaid but if I ever had to pay $12,000 a month myself it just wouldn’t happen. I am only 36 so we are talking just under $150,000 every year for a long time still and that is just the injections. My other maintenance meds (blood pressure, depression, anxiety) are a whole separate thing. When my cortisol does get to normal we may be able to ween off some of them, thank god.

So, for long term I still have to do either the trans-nasal or radio surgery to get rid of the hormone producing tumor. I’m pretty set on radio surgery. I spoke to Dr. Smith’s office today and they say the 14th or 21st. I’ll hear soon for a set date.

So, with all of the above you may be asking why bother with Signifor at all. I must admit I ask myself the same thing sometimes but then I consider what has improved since starting.

• My mental clarity has improved. I was getting increasingly foggy.

• I am on NO pain meds. The muscle pain just for pain sake is gone.

• I am stronger. I no longer feel as if I cannot get out of bed or off the couch. I may not have lost any weight but I can carry it around now.

• My ‘sweats’ are getting fewer and farther between. Before I would break into a drenching sweat regularly for no reason at all. It’s now down to only about once a day unless I’m at a store or get to cleaning my house and overexert.

• I can sleep through the night.

• I no longer am constantly fatigued.

• I have hope that one day I could be normal again.

These are the things I must remind myself of when I have a rough day. The kind of sick I am now is much better that my previous disheartening misery. 🙂 So I’ll continue until a cure or insurance stops paying.

Feb 2016 I had the gamma knife radiation…bunches of fun. No changes…

…except it is now January 2017. My symptoms are returning, levels back up, whatever Signifor was doing, it doesn’t seem to be any longer.

My doctor who was so excited for challenge in the beginning is starting to throw around gastric bypass, Korlym, and BLA, There is no end to the bullshit.

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