Overwhelmed With Acromegaly

I was just diagnosed with a pituatary tumor secreting growth hormone and pitocin.  Everything is changing in my body phyically and I'm in a ton of pain.  I have carpal tunnel in both hands and can't work.  I'm exhausted and feeling gross...new shoe size, crazy looking hands, etc. etc.  

I feel completely overwhelmed and alone.  Any advice??  Other stories??  

SadEyedLady88 SadEyedLady88
3 Responses Mar 15, 2010

I was diagnosed with acromegaly seventeen years ago at the age of fifty. I probably had it twenty years and totally unaware of the systems, my hands and feet had grown, excess soft tissue of my face and my chest bone protruded. I went to an endocrinologist, not real familiar with the disease but with further research on my own I contacted a world renown pituitary surgeon, Dr. Martin Weiss at University Hospital in Los Angeles, Ca. I had the surgery and three days later went home. The soft tissue on my face was gone and my hands and feet stopped growing. Surgery is not for everyone but it was for me. I am alive and healthy today and feeling wonderful. Hope this helps

Hello. Pertant. Can you please describe your pre surgery experience and symptoms in detail? Please. Did you have any bad fatigue. Also. are all your organs healthy now? Any leftover impact from acromegaly?

I know how you feel 100%. I was diagnosed with a pituitary tumor and acromegaly when i was 21 years old but had gone through extreme physical changes at age 14 through age 16. It is hard to live in a world which cannot accept me . But i have finally after over 40 years, been able to accept myself and not worry at all what anyone thinks or says. It is what it is and i cannot change it. I have two grown children and i am OK.

Hi silent. Hi. Silent. I'm sorry about hearing your sad story. Can you please describe to me about your symptoms and experiences during your worst time, at what age did you get it treated. And do you think if there's any leftover health issue? Please allow me to eaducate myself. Thank you

Hello SadEyedLady88. I'm so sorry you're feeling overwhelmed and alone. I guess I want you to know you are not alone. Even though this is a rare disease, the Internet makes the world a little smaller... I'll show you where I began in February: http://acromegalicprincess.blogspot.com/ then finding Dr. Daniel Kelly via http://blessed-beyondmeasure.blogspot.com/. Make sure to watch the video of the pituitary surgery as it is very informative. <br />
I have the same symptoms as you (and my nose is huge, my face has changed, bottom teeth hitting back of upper teeth, vertigo, weakness, arthritis in fingers, unable to think clearly, lactating but low prolactin levels, etc, etc) and elevated levels of IGF-1. However, I passed the OGTT test and my endocrinologist does not see a mass on my pituitary or adrenal glands (MRIs done). I'm not sure what to do next. I'm freaking out basically.<br />
I've gone at this possible diagnosis, which initially scared the hell out of me, by reading everything I can find. The more I know, the less I can be caught off guard. That's just me but maybe it will help you. Hang in there. Read other folks journeys and just know you are not alone!