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Mary S (ladysslipper), Adrenal Bio

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Originally from December 28, 2007

I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.

Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.

My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.

My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.

With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.

I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.

 

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Maria, Pituitary Bio

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Originally from December 29, 2007

 

Hi there, I am 26 but I was diagnosed at the age of 16 with a pituitary tumor, 17 when I had removed the first time and 19 the seconded time.

Here is the story. I was pregnant at 15 and gave birth at 16. My son was born in June (I was 135 lbs) by December I was 240lbs. I had all the classis symptoms. Weight gain, thin skin, upper back hump, moon face, lack of a menstrual cycle, high cholesterol and the strata (all over stretch marks).

I was diagnosed in March in July (1999) since I live near Pittsburgh I had surgery with one of the doctors who developed the use of the Endoscope for removal of pituitary tumors. I had been told that the tumor would not come back. It was fine to have more kids. There was one in a billion chance that it would be a tumor that grows like cancer, and then there was a one in a million chance that there would be any of the tumor left behind that could grow back. A

fter words I lost most of the weight and the moon face. I had no need for hormones, because they only remove part of my pituitary, I also graduated high school and was married.

I felt very good when I gave birth to my 2nd son 22 months later (April 01). I was 160lbs. Well, I tried to ignore the weight gain, the lack of menstrual cycle, but when my hump started to come back and when in infant’s finger nail scratched me and I bleed, I self diagnosed this time and went to the doctor for confirmation.

I was 280lbs when I went in for the second time in November (2001). Now I am 90% sure there is a tumor up there I do not know I do not want to have a M I R to see. My husband and I will not have any more kids.

I still have a fear that it will come back on its on or if I suffer a body troma that causes the pituitary to enlarge that it will cause the tumor to grow and I will have to go through this again. I am still struggling to lose this weight. I am now 230

 

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Renee (rmaxwell), Undiagnosed Bio

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Originally posted December 5, 2008

My symptoms began when I was about 21 years old. At the time I worked as a Martial Art instructor so I was very physical and in good shape, weighing about 120lbs. Suddenly, and I do mean SUDDENLY, I gained about 60lbs or so. It was as if my clothes fit one night and then didn’t fit in the morning. The weight is mostly in the middle area. My face shape changed and I developed a second chin almost.

I also started getting some whiskers on my chin and neck. Not a lot, just a few, but it was strange.

I was under great stress at the time because I had lost both of my parents in the same year, to two different medical things. So as you can imagine, it was very difficult for me. I developed extreme fatigue, and anxiety attacks. Friends were sure all my physical and mental symptoms must be from depression over losing my folks. One friend advised I see a psychiatrist, so considering everything it sounded reasonable, and I did.

I was placed on Paxil, which caused me to gain even more weight. Since then I’ve tried so many antidepressants I can’t even begin to name them. I went through many SSRI’s, then SNRI’s, then tricyclic, and most recently as a last resort an MAOI.
But in spite of this, over the years my depression has only gotten worse. I’ve had two suicide attempts and been hospitialized a few times. My depression seems to follow a pattern or cycle, two weeks of barely being able to function, followed by a week of doing a little better, then a day or two of feeling good, then back to two weeks of misery, etc. I am not bipolar or anything like that.

I continued to gain weight, developed stretch marks on my belly and arms, got a lot of dark hair all over my belly, and the few whiskers that appeared on my chin and neck have become like a beard. I developed insulin-resistance, high cholesterol, and high blood pressure. I can seldom sleep at night. I experience such deep depression and fatigue that I haven’t been able to keep a job or finish collage, I barely function.

For many years I just thought I had really bad depression and continued trying whatever psych meds I was prescribed. I thought all my physical symptoms were my fault for being so depressed and not getting enough excercise, etc. And most of the time, I was on so much medication I didn’t really care, I was so out of it.

Finally I found a great psychiatrist who truly cares about me and wants to see me happy. After having little or no success treating my depression, fatigue, and panic attacks, she did some research and told me not long ago that she felt I must have something biological going on with me that wasn’t any type of clinical depression. She said she had tried hitting all the different receptors in my brain (seretonin, norephinepherine, dopamine, etc..) and I should have responded to something. She suggested I might have Cushing’s Syndrome. I went online to find out about Cushing’s and I was like “Wow I really match a LOT of these things!”

Now I am on quest for getting tested. It’s difficult as I do not have any health insurance. But I am making a little progress and hope I start to get some answers soon.

I either have Cushing’s syndrome, some other endocrine problem, or the most treatment-resistant depression ever.

That’s my story, thanks for reading. I’m open to any comments or advice.

-Renee

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Leann, Undiagnosed Bio

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Originally from December 14, 2008

I’m Leann, a 40-year-old single mom of three from Pittsburgh. My son was recently diagnosed with Congenital Adrenal Hyperplasia. Because of this, it caused me to suspect possible adrenal problems with my oldest daughter (age 19) and myself. I am unsure of my daughters exact lab results (she sees an endo on 12/22), but mine seem to be indicitive that further testing is needed to rule out Cushing’s Syndrome. That’s why I am here (well, that – plus my friend told me to join).

My initial bloodwork shows high blood pressure, high BAD cholesterol, low GOOD cholesterol, and high cortisol levels. I initially went to my PCP due to extreme fatigue! I am soooooooo tired ALL THE TIME! My muscles are always sore and my bones hurt. I am prone to miagraines. I have been clinically depressed, I believe my entire life, but was diagnosed about 20 years ago. The weirdest thing (possibly unrelated) is my diagnosis of Retinitis Pigmentosa, a degenerative retinal disease characterized by loss of peripheral vision and night blindness. My mom read somewhere that loss of peripheral vision is a symptom of Cushing’s, but she can’t find the website.

I also have gained a significant amount of weight in the last few years, all in my mid-section. I look like I am either 7 months pregnant or that I drink a case a beer a day.

My PCP seems to think that I do NOT have Cushing’s because my ACTH levels are fine, but he didn’t do any special ACTH testing, only the basic bloodwork, all drawn at the same time. I argued with the nurse about it and asked that my PCP call me back (on Thursday) but he hasn’t yet.

I am just so tired of feeling like crap all the time. I am hoping to find some answers here. Thanks for reading.

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Lisann, Undiagnosed Bio

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Originally from December 20, 2008

 

Being checked for Cushing’s. Have adenoma, long term hydrocortisone user, Graves Disease, a lot of the symptoms.

Don’t know much about Cushing’s.

Having cortisol,diabetes,lipid,blood test all next week.

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Margaret (Margaret), Pituitary Bio

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Originally from December 22, 2008

I have recently been diagnosised with Cushing disease.

I began having problems about 5 years ago with high blood pressure and weight gain medication brought blood pressure under control and diet pills helped me to lose a little weight.

Then just in 2008 started having stress fxs of feet for no reason bone densitiy test revealed osteopenia but with fxs osteoporsis. Blood pressure kept going higher but would not respond to more medicine. Started having kidney stones. Diagnosised with migraines/cluster headaches but mediciations not working very well, pain mainly on left side behide eye always. Had shingles. All this before I was 40. I always said “I am too young to be so old” now I know why. When blood pressure wouldn’t respond to meds I started investigating and asked PCP to do 24 free urine. I read her notes she put in there “patient thinks she has cushings” Well when first 24 free urine came back 141 range 3-50 She wouldn’t even talk to me just sent me straight to endocrinologist. He did cortisol total am (did it later than should cause of lab problem 10:30 am) it was still high 42.8 Second 24 free urine was 339 this time 1 mg dex suppression was 25.7 saliva was high too but hasn’t gotten numbers yet.

Waiting for MRI with contrast reults but 8 mg dex supp did suppress so we know it is pituitary.

It kinda has been a whirlwind cause first test was done in October 2008.

Oh did I mention the 60 lbs I put on in like 7 months!!!!!! I look 7 months pregnant!!! ANd fatigue I get sooo tired just cleaning house. I went to my GYN a few months ago and was told in a round about way that I was overweight and of course overweight people have less energy and excessive sweating. So she said eat less exercise more.

I am in touch with Dr Jane at UVA in Charlottesville VA and as soon as he reads reports, sees films etc he will schedule me for IPSS if needed and surgery.

I am scared and excited. Scared about what lies ahead the next year Excited that one day I may be “normal” again. Looking back at pictures from a few years ago makes me cry (something else I do more of lately) There are 2 different people then and now.

I am 41 years old now, married, mother to 3 girls (ages 14,9,and 8). I have a great job as a surgical tech doing just cataract surgery with 3 great doctors.

I am very scared and excited.

Blogger jackie m said…

my thoughts are with you margaret .I have had pit surgery and radiotherapy
it can be a long a drawn out process but keep positive jackie m from uk

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Melissa, Pituitary Bio

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From February 5, 2008

When I was 22 I had a pituitary tumor (cushings) which I had surgery for and thought I was cured but about 2 years ago I started having symptoms again and the tumor is back.

I am 32 now I wonder if this is really curable.

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