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Stephanie (steph), Steroid induced bio

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golden-oldie

 

From Friday, March 6, 2009

About 2 and a half to 3 yrs ago, i was being treated for a condition called Reflex Sympathetic distrophy.

While they were treating me, they were injecting me with steriods. And from that symptoms started showing up that had nothing to do with my rsd condition like; the red moon face, the obesity, the irregular periods, and the striae marks.

Due to the VA ruining all the tests they did, about 6 months later i was rushed to the hospital near death, when the doctors at the hospital did the tests they discovered that i had cushing’s syndrome and that i was lucky to be alive.

I am now cured of cushing’s however i still the striae marks all over my body and am still somewhat fat. I am afraid i could get sick again and am very self concious about my body.

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Neale O (NealeO), Pituitary Bio

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pituitary-gland

 

I was diagnosed with Cushings Disease in September of 2015.

I used to be skinny. I was 160 lbs dripping wet. I had a thin face and exercised regularly. In fact, up until 2 years ago, I was doing CrossFit every morning at 5AM, and was pretty good at it!

I guess about 5-6 years ago, I started putting on weight. It started with what I thought was just a beer belly. I was dating a great girl and we went out a lot to eat and drink. I figured I was just getting fat and happy. Fast forward (got married to her) and we started to live our lives together. One day (2012) I was going in for a routine physical and was going over some things with my PCP. He suggested we do a finger prick to check my Glucose levels. The sample showed a 567. He was astonished, and immediately admitted me to the hospital. I ended up taking 5 IV bags as I was severely dehydrated. My PCP then schedule me in for the next day so that he could tell me I had Type 2 Diabetes (runs in family). They started me on drugs and insulin injections. So there I was, being treated for Diabetes (the Sugars as they call them) and High Blood Pressure (HBP).

This went on for a while and my wife and I decided to moved to Florida. In the mean time my undiagnosed Cushings was starting to rear it’s ugly head. Big belly, stretch marks, limb atrophy, fatigue, major depression, reduced libido, moon-pie face, thin skin and bruising easily. The depression caused a lot of issues with my marriage and we ended up getting a divorce. I moved back to Baltimore for support from my family.

I worked at my uncles shop for about a year, then was offered a new job with a great company and I jumped at the chance. By this time, the atrophy in my legs had started to really take effect. The job ended up being too physical for me and I had to resign after 1 one month.

I decided to see a new PCP as I was not happy with my previous one. Within the first 20 minutes of our initial consult, she recognized the Cushings symptoms and quickly referred me to the Endo Department (Dr. Taylor) at Mercy Medical. She had me do a bunch of blood work and urine tests. The cortisol numbers were off the charts.

She then referred me to Dr. Salvatori at John’s Hopkins Hospital (JHH). I was very lucky as she got me in there quickly. After speaking with him, he thought I had a Pituitary adenoma based on the crazy ACTH levels. We did and MRI, and an IPSS. The IPSS showed it was secreting from the right side mostly. The left had some high numbers, but nothing like the other side. In the MRI, they could not see the tumor.

Dr. Salvatori suggested on more thing before resorting to surgery. I am to have a “wet MRI” in January., 2016 This should give a much clearer scan. He also started me on Ketoconozale.

This is all happening very fast (diagnosed Sept 2015), and I am looking forward to the upcoming treatments.

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Donelle T, Pituitary Bio

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Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.

He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.

“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, “Medical Mysteries,” looking at people who have recovered from rare diseases.

It was especially puzzling because Trotman had never had weight issues before.

In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.

So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.

“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”

To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.

In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.

“I doubled, like, I got a whole person on me,” he said.

There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.

Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing’s disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.

Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.

Dr. John Boockvar and Dr. Peter Costantino at New York’s Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.

“In Cushing’s disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.

There was no time to lose: Untreated, Cushing’s is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.

“The tumor was no bigger than the size of the tip of my pen,” Boockvar said. “And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable.”

These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.

“It’s wonderful. Every day it’s just like I feel a little stronger,” he said.

Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.

One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing’s, although doctors stress it is a very rare illness.

From http://www.today.com/health/after-gaining-120-pounds-1-year-rare-diagnosis-saves-mans-t6561

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Amy (Amy), Undiagnosed Bio

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undiagnosed2

 

I have been going back and forth on whether to add a bio here because I don’t yet have a diagnosis. Also, it is really difficult to believe in myself sometimes and occasionally I feel relatively good. Some members of my family don’t support or believe me, but my husband is incredibly supportive and has been with me since my symptoms first started. My sister and my dad have both said to me that they don’t think anything is wrong with me and either implied of outright said that I am just depressed. They keep pushing me to continue with school even though I am taking two classes right now and can barely keep up with them at this point. I graduated from college a few years ago in biology and really would like to go on but don’t really feel like it is possible since I was barely able to get the degree in the end due to my energy levels (mental and physical). At this point I am going to L.A. to visit Dr. F next Tuesday so I am hoping that I will be getting a diagnosis and that something good will come out of this.

I think that my symptoms started as a sophomore in high school. I noticed that I was always tired for some reason and couldn’t seem to “wake up” mentally a lot of the time. I also developed cluster migraines that were particularly hideous. This is also when I noticed that I had a buffalo hump below my neck which I assumed was caused from a fall on my head when I was seven years old. The logic here doesn’t really make sense since I only developed neck and shoulder problems and pain in high school with no symptoms beforehand. I had chiropractic care for years for a stretched ligament in my neck that could never seem to heal. At this time I was very thin (5’8” and 140lbs) so there was no reason that I should have had a fatty lump at the base of my neck. I also had stretch marks on my sides at this weight. I have since gained around 90lbs (about 120 if you count some weight lost over the years due to drastic measures) and I am now 25 years old. There are a ton of stretch marks now all over my body from my knees to my elbows.

I really don’t have an explanation for the weight gain since I have never eaten much. Over the years I kept assuming that I was going to start losing weight because I kept making changes that should have led to weight loss. When I talked to anyone about it the problem was always me and what more I could be doing relating to something they randomly read about weight loss. There was always an explanation for why it wasn’t happening and why I needed to just try harder. I have continued to exercise throughout most of my “illness” either intensively (beachbody insanity several times, running daily) or light (walking or yoga). The intense times are unsustainable for me and it is incredibly hard to get dressed or take a shower let alone do intense physical activity. Nevertheless, I try to run or walk a little every day. In my diet I have made considerable changes such as becoming a vegetarian, vegan, going on juice fasts of vegetable juice for weeks, and just severe calorie limitations. Now I just stay under 2000 calories a day. Frequently I don’t eat very much because I don’t have the energy to make anything. Some people on here talked of acquaintances not recognizing them- I have the same thing. I felt ugly on my wedding because of my weight and have noticed that people are not as kind to the heavier me.

Whenever I talked about having low energy and feeling down the answer was to go to a counselor and that I was depressed. Counseling throughout college was to no effect. I honestly don’t think that I am depressed. I feel happy much of the time, but I’m just very tired and foggy and it is incredibly easy to feel down because of this.

My symptoms and the development of new ones have gotten much worse over the years. During college I had to take a semester off and towards the end I felt like there was no way to keep up with my class load even though I pretty much studied all day long. My memory is terrible and any classes that required memorization were impossible. I developed low grade fevers that continued off and on during the day for at least three months. I sought medical treatment and was tested for HIV, lyme, lupus, hypothyroidism, etc., but the cause never became apparent and I think my doctor lost interest in trying to figure out what it was. My doctor said I probably had PCOS because my testosterone was at the high side of normal, and an infectious disease doctor said I was just depressed. I was too tired to fight for myself and I thought maybe the stress and work of school was getting to me and maybe I really was just depressed. I thought that the weight, the brain fog, the aches, and the tiredness would go away once I removed myself from a stressful situation-it didn’t and has since gotten worse.

I just had a cortisol saliva test done that I ordered from ZRT labs and it indicated high cortisol, but it wasn’t that high and was lowered in the evening. I don’t really know what this means since I thought cortisol was supposed to remain high at night if you have Cushing’s, but I guess I will see what the doctor thinks next week. I have so many of the symptoms and I don’t know what else to do if I don’t end up having Cushing’s. Some other symptoms that I have experienced or that are persistent include: eczema on my fingers, round face, fat neck, sore joints (hands, feet, ankles, hips, shoulders, back) and muscles, excessive sweating, high blood pressure readings, becoming more awake at night and having trouble falling asleep, hip, ankle and foot pain, very dry hair and loss, trouble climbing stairs and descending due to weakness, lower back pain and more neck and shoulder pain (my hump is bigger), blood pounding in ears after little activity, blotchy arms and cheeks, acne on my chin, hirstruism, feeling swollen and uncomfortable, body stiffness, spinal cyst, lightheaded, shaky and clumsy, feeling hot (maybe hot flashes), long recovery from colds and chronic sinus infections, long recovery for injuries, arms and legs fall asleep easily, menstruation date fluctuates constantly, trouble giving blood, nausea and stomach problems, anxiety, twice a bump on the side of my cornea that was inflamed and I could visually see and feel, and a few instances where I had abdominal pain so bad that I couldn’t move. As far as easy bruising goes- I never know why I have bruises but I don’t get them often. I do have some other weird things with my skin such as having “sleep” marks from very short term positions that will not go away for a long time. Also, easy breaking of skin… I once used an electric massager on my back and didn’t realize until later that it had literally mauled me. I had horrible red and circular scratches and (now) a large scarred area. Other times I have had scratches so minor that they barely broke the skin, but I still have a scar…

Being sick all the time is a very humbling experience and at times it can be way too humbling to the point where I feel worthless. I hope there is more understanding and love for people experiencing pain on a daily basis since it seems to be much more common every day. It has been really beautiful to see on this forum the support that parents are giving to their children with Cushing’s and support from doctors and other family members. I don’t know if I would have believed I could have this if not for your stories and your personal struggles to get treatment. The more I read (scientific articles and medical information and bios) the more I recognized that what I was feeling all these years was real and could possibly get better. Thank you for reading my story.

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Edith T, Adrenal Bio (Golden Oldie)

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golden-oldie

 

First diagnosed with Cushing’s November 1999

Petrosal sampling confirms Cushing’s in left lobe of pituitary March 2000

Transphenoidal surgery June 2000 (not successful)

From July 2000 – September 2001 on 200 – 400 mg of ketoconazole

Lost weight from July 2000 – November 2000

Began significantly gaining weight again in March of this year (2001)

Currently reshowing all signs of Cushing’s (for a while the buffalo hump and purple striae all but vanished – oh well – they’re back, as is the mid-riff bulge – urgh!)

Still hiking, biking, swimming, and cavorting and refusing to let this whole thing get me down (yeah, right – who am I kidding)

Endocrinologist currently encouraging me to consider stereotactic radiosurgery as I have made it clear I have no desire to allow anyone to remove my adrenal glands (not that I am any more interested in having my pituitary irradiated when it’s a hit or miss deal).

And that’s my history.

Edith T
from Squamish, British Columbia, Canada

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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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Rita (Rita), Steroid-Induced Bio

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Hello to those who are frustrated & suffering!

My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.

My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.

I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.

I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.

I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.

Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.

I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.

During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.

I was extremely depressed and felt like I was dying!!!

April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.

This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)

He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.

I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.

Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.

If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j

Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!

Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!

Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!

Thank you kindly for reading my story,
Rita in New Jersey

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