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sjw (Jane W), Adrenal Bio

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My name is Jane and I am 76 years old. I was recently diagnosed with Cushing’s Syndrome after years and years and years of suffering symptoms.

My doctor for the past 7 years said that I had pre diabetes, high cholesterol, high blood pressure, chronic kidney disease, fatty liver, asthma, emphysema, obesity, anxiety and depression. She missed that I have actual diabetes and often told me that if I would only eat right a lot of these problems would go away. She missed the leaky heart valve, COPD, and most important, the Cushing’s.

in 1997 another doctor told me that I had a harmless tumor on top of my kidney. He said it was nothing.I shouldn’t worry about it, just forget about it, it was nothing, That was about the time my weight began to go out of control. So for at least 30 years I have not known what was wrong with me.

I spent 2 weeks in the hospital with depression while on a 600 calorie diet and I gained weight. My new endocrinologist said he was scared when he first saw me. But he has promised to take care of me because nobody else has. He has started me on Korlym and I was feeling a lot better at 3 weeks, after losing 17 pounds with no effort. Now though, I have started a new trial. This new drug does not block the progestin so in the long run will be better for me.

We shall see. I can only hope.

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Angie (Angie), Pituitary Bio

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My name is Angie.

I went to the Dr. in about Sept. of 2014 and was diagnosed with diabetes. I hadn’t seen my primary care Dr. in awhile due to her being out on pregnancy leave. She was there that day and she looked at me and told her nurse to set me up for labs to be tested for Cushings. She told me I had the look of a Cushing patient. I had gained about 50 lbs in about 6 months. I had the moon face and all the weight was in my stomach. My labs came back positive for Cushing. I was already seeing an Endo Dr. and she sent the labs to that Dr.

My Endo Dr did test on me and within 6 months they were positive I had Cushing. It showed I had a tumor on my pituitary gland. I surgery on my pituitary gland on April 11,2017. The endo dr at the hospital I had surgery at told me that the surgery was unsucessful I still had Cushing. They did a MRI in Oct. of 2017 and it showed I have 2 tumors on the gland now. I’m going for another MRI.

On May 7th to update so the surgeon will know if he’s going to take half of the gland or the whole gland. So that’s where I stand at the moment. I have diabetes, high blood pressure, high cholesterol,trouble with my bladder, kidney failure and my heart doesn’t relax its staying stiff all the time and causing me to have chest pains daily. I also have chronic migraines.

I joined a group on facebook when i found out i had it and read alot and asked alot of questions. People that don’t know anything about it needs to read up on it. I sent a link of the Cushing’s site to everyone in my family to read up on it. Some have and some haven’t.

Theres still alot I don’t know and I think it great that the ones that does have it and know alot more than some of us is a blessing.

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Stuart M, Parent of a Teenager

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Hi All. I’m a parent, registering unfortunately out of pure frustration over poor progress made here in Brisbane, Australia on my 15 year old daughter’s apparent two diagnoses – Cushing’s Syndrome and Hashimoto’s Thyroiditis.

This is hell for her as a teenager, as the chronic weight gain plus all the other acute symptoms ruin her life, and chip away at her once-immense self-esteem. I hope some success stories here and any of the beautifully helpful souls out there might point us in dark corners we haven’t been into yet.

Should I ever get even one reply from anybody out there, it will be adored and immensely appreciated – my devoted thanks in advance.

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Roxanna (Dawn), Undiagnosed Bio

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I’m writing because im frustrated and sad. Today I got my results and doctor says negative for Cushings .
CORTISOL, FREE 24 HOUR.
F CORTISOL, FREE, URINE 36.2 Range 4.0 to 50.0

I have another appointment with an assistant to an Endocronologist but that’s not until next month March. I’m tiered of waiting.

I’m fatigued all the time. Insomnia. Emotional and currently tapering off venlafaxine. Lots of hair for a female. Camel hump.

Large abdomen. Low thyroid and high testosterone. Purple stretch marks. Edema in ankles and legs. Extreme joint paint and vitamin D deficiency. My teeth are decaying. I gained 50-60 pounds in 1.5years. Memory issues. Prediabetic and some hypoglycemia. Blurry vision sometimes.

I was hoping finally I would get treatment. I want to get an answer and help. I want to live again. I want to one day have anther child. I just know that I cannot plan on moving forward with life without taking care of this. I feel like I’m just in a hole.

I’m 31 years old.

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Stacy B, Pituitary/Adrenal Bio

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Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

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J Stone (J Stone), Pituitary Bio

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Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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Moxie G, MoxieGarrett, Pituitary Bio

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August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

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