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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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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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Sharon M (Sharon), Ectopic Cushing’s

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lungs

 

I was diagnosed with Cushings in 2005. I had surgery in 2006 which required my lower right lung to be removed. Mine was rare because my symptoms cycled.

After having surgery in April of 2006, I was doing very good. All my symptoms went away, I lost weight, worked out and had few bad days. However, 3 years ago, I started feeling fatiqued and sick a lot. Now, about 6 months ago, almost all my endocrine problems are back. I’m not showing any outward signs though..

I’m seeing my Endocrinologist again and being retested because now I am not doing good at all.

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LisaG, Ectopic Cushing’s (Golden Oldie)

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golden-oldie

 

Diagnosed April 1997 with Cushings. They figured it was about 9 years in coming to a head. Started with the weight gain then disc problems (surgery), problems with my teeth breaking, acne, facial hair all the good stuff. Kept changing my hair color as something just wasn’t right but eventually realized it was my skin color darkening.

Took a trip to NYC in Feb of 1987 and swelled up and turned yellow during the trip. Went to the Dr when I got back and they tested me for Hepititas (sp?) and AIDS. Dr asked me if I had been using steroids. Changed Dr’s due to a change in my health insurance.

I talked to her for about 10 minutes about all my symptoms and she said “You have Cushings”. She sent me to an endo at Portland Diabetes Clinic. He got me in to see Dr Cook up at OHSU (Oregon Health Science Univ) and he scheduled the Petrus Sinus Sampling. From that they determined it was an Eptopic tumor.

They started doing Catscans and MRI’s until they found a small lung tumor. I finally had surgery in Sept 1987. The months leading up to that surgery were pretty scary. I ended up being pretty heavily medicated by the psychiatrist I started seeing. I think for me the mental and emotional symptoms were as bad or worse then the physical symptoms.

I’d like to say that’s where this ended but…alas. I started experiencing the same symptoms again and went to the Dr again in April of 2005 and was again diagnosed with Cushings. I am back with Dr Cook and am awaiting the results of the second Petrus Sinus Sampling.

Update October 26, 2006

2nd Sinus Sampling again was negative so again have an Eptopic tumor. After about 4 months gave up looking and decided on a BLA. Since my surgery in Sept 2005 until today Oct 2006 I have lost 60 pounds and my Cushing look is starting to fade. I take my medication without fail and have stayed with my new healthy lifestyle. Still looking for my eptopic tumor, it hasn’t decided to be found yet.

To all those not yet diagnosed or “cured”, Hang in there. If you aren’t happy with your doctor, find a different one. Also, don’t wait for someone else to tell you about your disease. Research!! Hope my next update will be for my tumor removal.

 

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Margaret D (MargaretD), Pituitary Bio

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Original Bio:

My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.

Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.

In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.

My symptoms kept getting worse with time.

In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.

As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.

In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.

Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.

We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.

I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.

I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.

I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.

I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…

Update December 12, 2013:

It’s been 10 years now since I had my “cure” for Cushings.  I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy.  I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.

I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back!  Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.

Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings.  God Bless to all!

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Jennifer (jennie75), Ectopic Cushing’s Bio

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I’m a 37 year old female that has been going through the Cushing’s diagnosis process for a few months now I just had surgery on Monday and it looks like the mass on my left ovary was the source of elevated acth.

It has been extremely hard to find information or finding  anyone else going through this process and that is why I decided to join.

I’m on Prednisone for a few more weeks and then I will be tested again to see if surgery was successful. In the meantime, I’m trying to find some answers.  Any response is helpful and I look forward to learning more about this condition.

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Magdalena, Food-Dependent Cushing’s Bio

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Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.

A Golden Oldie last updated 01/22/2008.

~~~

Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.

I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.

I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.

When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.

Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.

At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.

I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.

Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.

I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…

At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.

It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.

The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.

The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.

I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.

I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.

I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.

If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.

The most important advice i have to give is this:

    1. GO TO A TEACHING/RESEARCH HOSPITAL!!!
    2. If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
    3. IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
      • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
      • I use stevia instead of sugar because its natural (health food isle.)
      • alcohol really hurts now, so only a little wine occassionally.
      • lots of yogurts.
      • every couple days a mixture of senna laxative and stool softener (not too often)
    4. Remember the squeekiest wheel gets the grease.

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