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Michelle (Michelle), Cyclical Cushing’s Bio

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I am an avid runner run about 15 miles a day then in April I gained 50 lbs my worst nightmare. I gained 50 lbs in two lbs with no change in activity or eating. I was ashamed and embarrassed I didn’t want anyone to see me my friends or family.

Then I broke out in hives all over my body I went to urgent care. They saw a large hump on the back of my neck thought I had cushings. I saw 10 different doctors in la. One passed me off to another.

It was a nightmare then I went to Mayo Clinic where she thought I had cushings from an external source ( September ) she told me to just wait and everything would go back to normal. Even though there was no outside steroid source.

Then I wasn’t getting better in the end of October I went to two doctors in nyc, who didn’t do anything.

Finally I found an artical on cyclical cushings and sent it to my doctor at Mayo Clinic. She agreed with me and told me to come in. My cortisol was finally high now and she’s running other tests I hope I’m fixed soon.

I’m so sad and depressed.

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Stephanie M (Stephanie), Pituitary Bio

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I found out I had a tumor on my pituitary gland in Nov 15 quite by accident, as you do!

I’d had an ovarian cyst and endometriosis taken out quite easily and then a horrific back surgery to take out a cyst on my lumbar spine. I was ( and am still) dealing with chronic severe nerve pain and numbness in my left leg and foot.

I’d been told I needed to watch what I eat and exercise even though I did both and still I gained 30 lbs. An ENT found the tumor on an MRI after I had a lymph node practically explode on my neck! Ugh.

We were getting ready to relocate to AK from TN and still hadn’t been diagnosed. I had to travel to Seattle from Fairbanks for all my appts!

Long story short, I had a macroadenoma on my pituitary gland. By the time I had my first surgery, I could barely think rationally anymore, I was in terrible pain, I had very little muscle strength left, and I’d gained a total of 70 lbs. I can’t remember much of that time. I had negligent pms and great but distant specialists.

I had to go back for a second surgery then have radiosurgery w/ a gammaknife in the Spring of 2017. I took mifepristone for too long because my Seattle endocrinologist moved to AZ. It worked well then it was making me sick. I couldn’t eat and lost 50 lbs. I changed all my doctors and am now making the uphill climb. I’ve gained 10 lbs back and my progress with muscle strength is so sloooow. I’m thinking much clearer now.

Because of this experience, I have learned to be an advocate for myself in the medical field, I am a cynic about the human race still but appreciate people and the world a lot more. I have learned to be patient because my life has slowed down.

I am the only Cushing’s patient in Fairbanks I think. It’s hard because I’m in remission but it’s just stage 3 after diagnosing then curing. Now it’s recuperating after being ravaged by the disease. I have no idea how blogs work. I don’t know where to start w/ regards to mining all the info. Thanks for having this site. I was going to make my own if I hadn’t found it!

Stephanie’s doctor

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Melissa (MelissaZ), Steroid-Induced Cushing’s Bio

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Hello, my name is Melissa and I have Cushings due to long term Steroid use.

In April of 2012, I was diagnosed with type 2 diabetes and anemia.

About a month after my diagnosis, I started to have repeated sinus infections in my left nostril. After going through a number of antibiotics, my primary did a Cat-Scan which showed a growth the size of a quarter behind my eye.

I was diagnosed with a rare auto-immune disease called Idiopathic Orbital Inflammatory Syndrome (IOIS). Treatment for this was a high dose of Prednisone (steroid. 80mgs per day), which I was being tapered off of but because I was being tapered too fast, the IOIS relapsed so I went back on the high dose again and then tapered from there.

I have been off of the steroids now for 4 months and left with Cushings. I gained 120lbs which is the major of my complaint. I am moody, I do have irregular menstrual cycles, sore muscles (especially in the morning when I wake up), fatigue, memory loss, and a slight hump.

I don’t think my symptoms are as severe as the majority of people here, however, I am 318lbs and extremely misereable with my weight. I have started a nutrition regimen and hoping to drop at least 10-20lbs so that I am more comfortable to work out. I pray everyday that this will go away sooner than I am told it will.

Unfortunately, I am still having issues with my eye as well as problems keeping my sugar levels down. I’m up for any advice and will be more than grateful to share and compare stories with others.

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Robert, Pituitary Bio (Golden Oldie)

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golden-oldie

 

My Comments: (will add more later, written by wife)

Pituitary surgery 12/15/05 but not able to get it all.
33 treatments of radiation in April/May 2006
April 2007 still have Cortisol level of 166, back on Ketaconozole
remaining tumor measures 2.6 cm x 1.8 x 1.4

age 51

Cushing’s has lead to:
diastolic heart failure
osteoporosis
gaining 60+ pounds
restless legs
muscle weakness
fatigue
dry heaves (anyone else have this??)
anxiety, depression, restlessness

currently monitoring Cortisol levels, to have another MRI in August
keeping adrenalectomy as last resort

would appreciate tips/suggestions….

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Melissa, Pituitary Bio

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golden-oldie

 

From August 12, 2007

I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.

I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.

I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.

My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.

Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.

Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.

I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.

 

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Kim H, Ectopic Bio

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golden-oldie

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Sloan, Pituitary Video

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The second episode of Pituitary Grand Rounds features Dr. Lewis Blevins in a compelling discussion with Sloan Hart, a patient with a dangerous, delayed diagnosis of Cushing’s disease, which caused tremendous hardship and suffering.

Katelyn, Pituitary Bio (News article)

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WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.

After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.

The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.

A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.

But soon after that her face started to change.

She said: “Moon face was the first major symptom I noticed.

“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”

Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.

Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.

“I was literally unrecognisable to myself,” Katelyn admitted.

“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.

“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”

Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.

Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”

Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women”.

“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,” Katelyn claimed.

“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”

Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.

“These things are normal as a woman,” one endocrinologist said flatly.

So Katelyn, from Long Island, New York, began doing her own research.

“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.

When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.

“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.

“That’s when I knew it had to be Cushing’s.”

Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.

Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.

“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.

When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.

Katelyn says: “I was the one who connected the dots and pushed for the right tests.

“I trusted myself, and that’s what saved me.”

Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.

“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.

“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.

“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.

“But this too shall pass. It gets better.”

From https://www.thesun.co.uk/health/36966323/moon-face-dismissed-adult-acne-cushings-disease/ – lots of pictures. And ads.

Steve, Ectopic Bio

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I am recovering Ectopic Cushing survivor, I am 52 years old, I originally got sick when I was 22 it was 1987, I went un diagnosed for 12 years. I had every symptom there is with Cushings from the crazy weight gain to blood pressure being at stroke levels for the 12 years and terrible vision issue that I still struggle with today.

I had 2 surgeries, first I had the Pituitary surgery which left me on deaths door, miss diagnosis of Pituitary when it actually was ectopic with a nickle size tumor in my right lung between my upper and middle lobes. they removed all but a potion of my upper lobe.

I have struggled with vision issues ever since as well as depression, terrible fatigue and all of the other issues that come with having Cushings!

 

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Voices from the Past: Kristin T, Undiagnosed Bio

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undiagnosed4

Currently undiagnosed but I am a medical professional, and not stupid.

All through my adulthood (age 21ish to now at 43) I have had the following symptoms: B12 deficiency, Vitamin D deficiency, the depression/anxiety/irritability, major loss of emotional control (I can cry at the drop of a hat, sometimes in very inappropriate situations (like at work).

I can gain weight like no tomorrow (60 pounds over about 8 months. The only way I’ve been able to lose it is either gastric bypass (which created a whole other set of issues and had to be reversed) or an entire month on IV nutrition (TPN), in short abject starvation.

I have stretch marks all over the place, a fat abdomen (in spite of a tummy tuck), fat upper arms, fat thighs, back fat (oh yes, the ubiquitous hump between my shoulders and fat pads above my clavicles). I am weak to the point that a two mile walk has me in bed for the rest of the day. Forget working out, I drop from exhaustion. my back hurts, I have horrendous posture and get muscle spasms and a backache when I try to remind myself to stand up straight. I am always thirsty, and subsequently pee nonstop, I have a seemingly insatiable appetite usually for carby type stuff (although I really try to pay attention to what I eat).

I’m a total klutz and oh yes, the crowning glory: I have hair on my inner thighs, heavy hair on my lower arms and I can win a beard growing contest with a bunch of guys, although testosterone levels have been tested and are unremarkable. I’ve got a bit of hypertension (although also a little decreased kidney function, which may explain that.) I had a total hysterectomy for the heavy bleeding and constant ovarian cysts (but not the string of pearls pattern indicative of PCOS. Libido?, yeah right. I have the sex life of a nun and am frankly not interested. This is not genetic because I am the only one in my family that is like this.

Over the years I have been diagnosed with PCOS, major depressive disorder, and more recently some kind of unspecified eating disorder (apparently just because I’m fat). I have been treated as such over the years with totally no change. Birth control pills just made me bitchy, the cocktail of antidepressants seem to help minimally (I can still cry over nothing), and this is now having a huge impact on my professional life (like nearly destroying my career).

If all this crap isn’t a good reason to at the very least, look at Cushing’s, then I don’t know what is. Incidentally I had a doctor, some 13 years ago start the workup for this (had 24 hour urine, dexamethasone suppression test and a brain MRI) but this was pre-nursing school and I did not realize the seriousness of what he was suspecting, so I never followed up.

I finally have a primary care doctor who has immediately referred my to an endocrinologist. I appointment in 2 weeks and well…to be continued….

Updated January 9, 2016

still searching for a doctor who gives a ***. I’m quite peeved. It’s been a while since I updated because, well, just busy.

I went to the appointment and the doc pretty much just blew me off. i said that in my opinion, it was worth at least running the tests. I could be wrong but please humor me and run them. Well, he sent me off to the lab and all he did was a one-time single cortisol level. It was normal. His diagnosis, “weight gain due to excess calories” and recommended a medication that costs $1200 per month and was NOT covered by my insurance!!!!! Seriously????? Jerk!! I came into some money, so I ponied up for 2 months worth of the medicine and thus far I’ve lost 12 pounds and now I am plateaued. My new insurance covers it, so i’ll keep at it, but I’m finding a new doc. How hard is it to just run the bloody tests!!!

Have to go now, it’s time to shave the hair on my chin and go to my therapy session for depression. Someday, maybe someone will believe me, hopefully before I die!!!!!

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