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Nele, Pituitary Bio

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A Golden Oldie

I was born on Febr 1949 in a Village near Cologne Germany I have 1 Sister and a Brother and we all grow up healthy and happy.  I finished College in 1972 and worked as a RN in several Hospitals and Depatments.

1986 we had a terrible automobil accident and after taking Xrays from my head the found a macro tu.It  took me by a surprise..  i was shocked, even do i looked like a cushie for years(doc were telling me i should eat less)  so finaly i was diagnosed and  the havy set girl had a  name….  sadly to say. Cortisol levels were elevated but what was most shocking to the Endokriologist were the  huge ACTH level  .. normal level at that time was 100  ,mys were after the 2 time taking 12000. Little did I know what will happen to me (even as a Nurse i  myself the first Patient i saw with Chusing)  That time there where not many people who had that desease  .The adrenal  glands were normal no Tu ,but i had a macro tu in my  pituritay.It took more testting and preparation to  go to surgery.

The took all the test that where needed to be done at that time  (1986)  and on OKt the 6 i want into surgery, which changed my life forever…after surgery. The removed the Pituritary   i had a drainage in my back for liqour liquid… my head was hurting terrible  after a couple days i had the empty sella symptoms…for 3 days i had stars in front of me  may i  say it like that.  And than the  Diabetes Insipidus startet… which stayed with me for 10 years.I am full replacement of all hormons  and since one year i get  growth hormones which give  me a bit more energy .In the meantime i baddle the desease osteoporopsis, what ever i do it  takes over my body  ((((

If i can help anybody please feel free to contact me

Much love my fellow chushies from

Nele Weal

Please i am so sorry for mistakes i made in english here   i am german National and speak  well english but the writing part is hard for me


Note: Nele submitted a second version of her bio:

HellO I am Nele born in Febr 1949 in Germany lived there want to school there and college . I am a retired RN .

In 1986, we had a terrible car accident, and my head was xrayd and the found the tu. But weight gain i had for many years . Not one doc thought, that  i  might have cushings, not the tested me for it.All i heard was loose weight stop eating.  which i never was a overeater  anyway.

MY ACTH levels were so high… that the never dod the 3 test..  the 2 test came back into the 12000 normal would  have been that time around 100.IN Okt 1986 i had my surgery, and this changed my life for ever….  the removed my pituritary totaly .

My Surgeon said  that the P was through and through woth Tu mass..after Surgery i had D I  and drank so much and this for 10 years i had shots for it as well  .  I forgot how big the TU was. I had all ready blind spots in my vision..  which i never realized because, what you don’t see you move your head.

I am on 100% replacement Meds including thyroids  HYC and since one year i been getting  growth hormons  which help me a lot with my energy level.  But the downfall of all the  HYC  is  i have severe  osteoporosis and   get tretament for this now. I doing ok i guess. life is not easy living with the desease but we are positive and move forwards.

Sorry for my bad english .  i have a hard time writing, in speaking i am better.

Have a nice day

Love  Nele

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Desirae (Desirae805), Undiagnosed Bio

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I am a 24 year old newly graduated registered nurse (dec 2011). Who is currently undergoing testing to confirm or r/o cyclic cushings at UCLA.

I have always struggled with my weight and self esteem and I finally had enough in april when I went to see an endo to see what was going on I mean how could I not be losing weight netting 1100-1200 calories aday and doing spin class and 5k walks! I have done every diet known to man and ws even anorexic for a while.

I had elevated urine test at UFC of 69.7, not high enough to confirm cushing but is very suspect because of my s/s. I have round, face, abd obesity (most people think I am pregnant), stria, hair loss, fatigue, anxiety, tachycardia, muscle cramps (low potassium), buffalo hump, and so on and so on. I am so frustrated I just want to cry all the time, I just want to know what is wrong.

Curently I am to see my doctor in 6 weeks and have 10 24 urines and 12 salivary cortisols to do. I am a nurse and doing a 24 urine at work is hard. I am supposed to get married next year and I want to feel beautiful not sick, not tired, not neck pain, and not heavy.

I am tired of hearing you probably don’t have that it’s rare when obviously something is going on. AND I HATE hearing your YOUNG you can lose weight when ever you want.

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