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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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Michelle, Adrenal Bio

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A Golden Oldie

I am 37  years old and was recently diagnosed with Cushing within the last month.

adrenal_glandsIn 2010 I was injured on my left leg and for the past three years have been going through medical doctor to doctor. I was only able to return to work for a month and had to go back out on disability because of symptoms. I would get weird mysterious symptoms every month, my doctor said there was clearly something going on in my body.  I have been diagnosed with heart burns, sleep apnea, low blood pressure, high blood pressure, vitamin d deficiency, anemia, possible diabetes, now obesity, fatigue,anxiety, and fibromyalgia.

It has been a very long process to get to the Cushings diagnosis. Prior to all of this I did not have any serious health problems, I was a litigation attorney, every day I was in court running around with no health problems. I am hoping that I am on the road to recovery since I have been finally diagnosed.

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Patty L (Answer hungry), Undiagnosed Bio

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I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Christine (Christine S), Pituitary Bio

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I don’t know really where to start.

My life has changed a lot in the past year.  Last August, I was diagnosed with Cushing’s but if it wasn’t for my boyfriend watching a special on Cushing’s I would still be battling the symptoms today.  About 5 years ago I started to gain weight.  I’ve always been very active and eating  protein diet. I would exercise 5 -6 times a week and still gain weight. It didn’t make any sense to me. I  had a personal trainer and he didn’t understand why I wasn’t losing wieght. My stomach continued to get a bigger pouch. I looked pregnant.  Over the course of the past few years my weight went up and down.  Then I started bruising very easily. People probably thought I was in abusive relationship which was not the case. I had my blood tested for being anemic. My white and red blood cell count went up and down. The doctor’s did not know what was going on and sent me on my marry way.

July 2012, my life changed. My boyfriend caught the end of special on  Cushing’s. He asked me if I’ve ever been tested for it? I said “No”!! I  was telling my mom about it and how my boyfriend felt I should get tested for it. I really didn’t want to go to my doctor and say test me for Cushing’s. She told me to go get tested. The more I researched it the more I realized I may have this. I finally made an appointment. I went to my doctor and highlighted all the related systoms. I had 11 out of 13. She believed me and started testing me. After all the urine, blood, CT and MRI scans. They diagonosed me August 2012.

I must say I’m lucky things fell into placed. It wasn’t long after my diagonses I was making appointment with Dr. Q at John Hopkins University to have my tumor removed. I

Location of the pituitary gland in the human brain

Location of the pituitary gland in the human brain (Photo credit: Wikipedia)

He would have to remove my gland if he wanted to remove the lesion. Which means I would not have any hormones. He did not want to take that away from me since I’m only 28 and have a lot of life ahead of me.  6 months post surgery I’m still taking Hydrocortisone. They are slowly weaning me off the drugs.  I can see a few changes. My memory and concentration is coming back. I now have definition back in my face. My weight is still up but that’s due to steriods. I hope that comes down once I’m off.

I beleive I was diagonosed at the right time. It seems like my symptoms took a turn for the worse in a matter of month after I was diagonosed. I wonder today what my life would be like if my boyfriend never saw the special and I never had the surgery. Dr. Q and him saved my life!!!   I just pray everyday that the lesion does not turn into Cushing’s. So far, I’m in remission!!!!

One note to all my fellow Cushie’s ~ You have to fight for yourself. Cushing’s is hard to diagonose. If you’re doctor’s don’t believe you find someone who does. Don’t give up!!!

Mary (TheGoat), Pituitary Bio

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I had 3 transphenoidal surgeries 1 month apart in 2003. I had a csf leak and when it was repaired the pituitary had become necrotic and I lost the whole gland.

They said that did not cure the cushings so I had a BLA in 2004.

I have had nothing but health problems since then. Diabetes, fatty liver disease, frequent adrenal insufficiency, severe anemia despite no periods,  vitamin d deficiency, and other strange things.

They are now working me up for the neuroendocrine carcinoid tumor in the stomach or small bowel. It has been quite a road and I am not sure if I would do this all again if I could.

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