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Genevieve (JenNYC), Undiagnosed Bio

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to-do-diagnosis

 

I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.

Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones.  My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.

I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.

I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.

The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.

I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.

I need advice.

Dee (Dee), Pituitary Bio

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My menstrual cycle ended when I was 38 years.  After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving.

I saw numerous doctors, and each worked with the symptoms as the came, but no one put everything together.  My feet and fingers were numb, and I was losing the ability to think correctly.  I had severe depression and anger issues.

I saw an article in Reader’s Digest about a mysterious illness and took it to my current doctor.  She really didn’t think I had Cushing’s because it was so rare, but my 24 hour urine test came back postive.  Next I was sent for the MRI which showed the tumor on my pituitary.  I had surgery June 27,2007.

It took 18 grueling months to wean off the Prednisone.  I had chronic nausea and diahrrea during this time.  My Endocrinologist did not study up on Cushings and removed my Prednisone 1 week after my surgery.  I crashed and was taken to the ER in serious condtion.  He did it to me again a few weeks later, with the same results.  After the second time, he left my Prednisone alone for the next 18 months.

October 27, 2011 I had Paraespohcial surgery where my stomach had been pushed into my lungs.  It was a very diffcult surgery and recovery.  I am now batteling Celiac, which after reading up on Addisons, I am wondering if I have Addisons?  I had Addison’s crisis twice when my predisone was removed to quickly after my brain surgery.

Even though I am cured of Cushings, it seems the side effect continue to make their debutes.  I am grateful for where I am today, even though I don’t know what is around the corner.   I guess what’s around the corner will be dealt with when I get there, but for today, I am thankful.

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