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Crystal, Pseudo Cushing’s Bio

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I was first diagnosed with psudo cushings at Duke University and was told that if I wasn’t better in a year to come back. I was on crutches for three months because of the weakness of my bones and I had fallen and cracked my pubic bone.

I suffered for a year and went back. I had high blood pressure, swollen legs and ankels, bruised easily, had gained 50 lbs., depression, my hair texture changed, it was like straw. My mid section was hugh, my face was huge . I had swelling around my neck. My toenails on one foot were crumbling. I had blurred vision, weakness in the legs and fatigue. I have probably left something out. I had MRI’s and CT scans and they couldn’t find a thing.

Thank God they referred me to the National Institite of Health in Bethesda, Md. In June of ’07 they ran every kind of test they could and could not find a tumor. I have been put in the catagory of one in two million. They first put me on a study drug called RU486. It was an abortion drug used in Europe in the 80’s which caused much controversy. It was supposed to keep the cortisol from attaching to the red blood cells. I took it for 3 months but it did not work. I just got worse. My potassium would drop and my feet would swell so big I felt like they could pop. I was given 20 bags of potassium intraveniously in one week at the NIH. Oh yes, I was also anemic and had to have a blood transfusion.

As a result from weak bones, I have also developed Avascular Necrosis. My right shoulder has deteriorated which causes much pain and I have to live on pain medicine. I stopped the study drug and am now taking the max dose of Ketoconazole and am also taking Mitotane.

I stayed at the NIH from Sept. to Nov. , 8 weeks altogether. I lost 35 lbs in one month. I felt almost like my old self again. I have a paraesophageal hernia and was taking Protonix. The doctors discontinued Protonix because one must have acid in order for the Ketoconazole to be absorbed.

Eventually I was in great pain. I had to sip my drinks and couldn’t eat sometimes without throwing up. Jan. 6 of ’08 I returned to the NIH and they did MRI’s, Ct’s, Octreoscans, etc. and still fould nothing. They think the tumor might be behind my hernia but with Cushing’s it is too risky to have the surgery for my hernia I am told. I got home Jan. 24 and was in more pain. I could hardly eat or drink.

On Jan. 30 I broke out in a cold sweat and started vomiting and then I had what I thought was diarrhea turned out to be fresh blood. My husband call for an ambulance. It turns out that I had developed an ulcer and it had a blood vessel in it that ruptured. I lost 1/3 of the blood in my body. The doctors told me I could have died easily. They were able to correct it with an endoscopy. I stayed in ICU for 2 days. I was discharged from the hospital just this past Mon. The idea here is to drink Coke with my medicine in hopes that it will produce enough acid to absorb since I must now take Protonix.

Tonight my ankels started swelling some and my arms are bruising. I am very frightened. If this medicine doesn’t work, and they can’t find the tumor, all that is left is an adrenalectomy. I hear that one never feels the same. Please someone, let me know.

Oh, I will be 48 on Feb. 12 and have always been healthy. I had never even heard of Cushing’s until I got it.

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J, Pituitary Bio

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When I began this journey in 1999, I could only find one link for pseudo cushings on Google. I actually gave up finding anyone else like me until today. I was misdiagnosed several times before 2001, when I started seeing Dr. David Schteingart at the University of Michigan (two hours from my home). I was to the point where I was lactating, was growing facial and chest hair, was covered in acne from stem to stern, was passing out, had gained 30 pounds in one month – all around my stomach, was developing a hump on my back, was losing hair, had lost strength, memory, and self-respect, and some days couldn’t even raise my head.

With high cortisol, prolactin, and DHEA I was told I had PCOS even though I have never missed a period in my life. I was then told I had diabetes because I had had a high sugar read when I was pregnant in 1995. I was treated with birth control pills, anti-depressants, and diabetic meds. All of these things made me worse.

Finally, I had an MRI that showed a 2-3 mm mircroadenoma on my pituitary. Two more MRIs confirmed the findings. I was sent off to U of M to their pituitary clinic to find that my pituitary was fine. They sent me to their endocrinology department where I was diagnosed with pseudo cushings. I spent several years traveling to U of M monthly and began taking oral ketoconazole. Yes, that’s right, the same stuff that’s in Nizoral the dandruff shampoo. It took about two years on this stuff for me to develop an allergy. Dr. Steingart told me to choose: relief from cushings or relief from the hives that covered 90 percent of my body. I chose to give up the hives and have not taken ketoconazole since 2004. This is what I have come to realize: I cannot live in a stressful life. If I miss sleep, don’t eat well, or stress out at work, my cortisol sky rockets and I’m back to square one. This makes working almost impossible. My adrenals start off and don’t stop when I’m in a pressure situation. I am like a Southern Belle with the vapors pretty much all of the time. The only difference is: I want to live my life. I want to return to my career and be supermom; my efforts are continually thwarted by my body.

I’m anxious to hear if there are others like me out there in the world and how they have coped and made a go of it.

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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Jules, Pituitary Bio

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golden-oldie

 

Originally from September 25, 2008

My journey with Cushing’s started six years ago at the age of ten. It started when I developed a duodenal ulcer. It was unbearably painful (this is coming from someone with a very high pain tolerance) and I have extreme stomach problems for at least 4 years following. I went to a gastroenterologist and got it somewhat under control.

This went on until the age of almost 15 when I just couldn’t take it anymore. By this time I had struggled with a very mentally draining family issue that had occurred. I became very irritable and depressed and just assumed it was from this hard period of my life.

I was shocked one day to see purple stretch marks running down my abdomen. I had been rapidly gaining weight and associated them with that. Always being an average size girl this weight gain both freaked me out and made me even more depressed. I was very irritable and unhappy with myself. I don’t overeat and am pretty active being an equestrian rider and working out at least twice a week. It made no sense. I knew something was wrong but had no idea what. My face has always been round but lately it was larger and red.

I decided to go to a new gastro. and was suprised when he felt the base of my neck and told me my thyroid was very enlarged. He quickly referred me to an endocrinologist who diagnosed me with hypothyroidism. I though I’d finally found the answer and expected my new medication to solve my problems.

To my dismay the symptoms only got worse. I was also now noticing fatigue and weakness.I gained 25 pounds that year when I should have been losing it after starting the medication. I was starting to get thirsty and drink all the time. I urinated frequently and sometimes had leakage. My periods from day one were very intense and I had horrible PMS but now they were becoming very weird and I am starting to lose them. I have sweet cravings several times a day and if I miss a meal by an hour I get an intense headache sometimes accompanied be nausea. It is now difficult for me to concentrate on schoolwork and I am extremely fatigued. I can’t bend my joints for long before they tighten and ache. I can no longer bend over without having bad pains when I straighten up again. Some nights I have an awful time trying to sleep and I feel as if life is growing harder and harder by the day.

After dealing with this endocrinologist for a year and having him ignore my other symptoms by telling me that my thyroid levels were normal I couldn’t take it anymore. I knew I was very sick deep inside.

I scheduled an appointment with my now lifesaver. My first appointment with Dr.Borg was the best day of my life. He did a full body exam (which the other doctor hadn’t) and immediately told me that I looked like a person with Cushing’s disease. He was completely shocked when I told him that the other doctor hadn’t tested or looked at anything other than my thyroid.

Advice to anyone who might have this disease is to insist that your endocrinologist runs as many blood tests possible and make sure they do a physical exam. This is what I think “saved my life”. I was told by my new doctor that I would have developed type 1 diabetes within 3 years.

After the tests showed that my levels were way off I had an MRI which confirmed a tumor. I should now say that the best day of my life was when he told me that the MRI showed that I had a tumor and this was very fixable. I was so relieved. Now I am seeing a neurosurgeon and am awaiting news of when my surgery is. What I would like to say to anyone struggling with this disease is listen to yourself over anyone else. I had countless doctors tell me that I needed to eat less and work out more.

Deep down inside I knew there was a reason for my weight gain and for the hurt I lived with everyday. I knew that life was better than this. I pushed my parents to bring me to as many doctors as it took until we found the one who could find the culprit. You are the only one who knows how you are really feeling. I know it’s hard but hang in there and know that there is a light at the end of that dark tunnel.

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Deborah S, Undiagnosed Bio

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undiagnosed

 

Hello all,

I do not know where to begin. For many years I have been struggling with these symptoms. I have proximal weakness, intolerance to stress, blood pressure fluctuations, hyperpigmentation, reactive hypoglycemia, sweating, severe dehydration, very bad confusion, vision, memory problems, physical body changes (hump, bruises), carb intolerance, and inability to exercise.

My endocrinologist did a workup for Cushing’s disease and the midnight saliva test was high. She brushed it off as “stress”. I am seeing a doctor now that says I have POTS and Dysautonomia. My doctor says I have inappropriate adrenaline rushes.

My body is falling apart because I haven’t found a doctor who will take my symptoms and test results serious. I would like to talk to others who are having trouble getting diagnosed and also to those who have gotten diagnosed who have a good doctor.

God Bless and Thank You,
Deborah

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ghadeer (gogo), Undiagnosed Bio

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undiagnosed3
i have all the symptoms of cushing disease or syndrome ( weakness in the muscles and extremely painful joints , got really fat though i don’t really eat , got a moon face really big stomach and the hump on my back , my reaction to the smallest kind of stress is extremely weird not to mention the truly stressful times , depression even though iam not sure why and all the other symbtoms ) .

but in my two first 24 urine tests the result came back in range which was over half a year ago . in the last one a month ago the cortisol came back low and when i did the acth stimulation test the cortisol in the blood before the acth came high (28) after half an hour 31 hour after an hour it was 44 , i don’t really understand ???

can anyone help .

 

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In Memory: Janice, Tuesday, September 4, 2001

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in-memory

Tuesday, September 4, 2001

Double click to see these ribbons
used in Janice’s memory.

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Funeral services will be on Tuesday.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.


A Poem written in Janice’s Memory:

JANICE’s POEM

When I Am Done
When the leaves settle
Among the earths soil
Then will I find peace
For all my work and toil.

Know not I when it will be
But of its happening, it’s a certainty
For once sick in body
Though healed in time
Can never be wiped clean
Of the illnesses grime.

The stamp of death
Left upon this soul
Will never have reason to fear
It’s pearly gates that have come, for some
But for me only when I am done.

~Adrienne Lilley

Written in Janice’s memory, may she rest in peace always.

One thing about Cushings—I no longer fear death. But I sure do embrace life.

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