Acromegaly Support Group

I can't answer your questions, sorry. You said something about acromegaly affecting more the left side of the body. I didn't know that. Most of my problems are on the left side of the body too.
I have a pituitary adenoma and my growth hormone is now 0. Over the years I grew 2 inches, hands and feet enlarged, tunnel syndrome both hands, left worse, heart left ventricle enlarged, face, jaw changes teeth problems (spaces) and a bunch of other stuff. I was not tested until the tumor showed up on the MRI now in June 09. In 01 I saw an endocrinologist who did not do the proper tests, she treated me like it was all imaginary on my part. I am sure the tumor was there in 01 because it is large now and they grow slow.
Are you seeing an endocrinologist? I don't know much about this, I was told it can be so different for everybody, it affects everybody in a different way.
Ulrike

Hi Berthe...I asked the question at the hospital what makes people have a tumour on the pit those that do...Then it decides its going to play with adrenal glands or be the conditon Prolactinoma or Acromegaly..For myself Im ambidextrous and thats fun that adds confusion to my already confused mind ROFLMAO..Specially when you do keepfit and have left and right written on your shoes..I was taller at school than most although compared to children today I would be the same as the majority of them.Im fine after meals the problem Im having is the odd craving of sweet things Ive been checked for undlying problem but Im ok..Im going to keep a diary see if theres a pattern because I checking against how my pit is working on the drug Im not surgery option and as its been shrinking and levels been coming down..The hyperness thats fun interesting to see those that have surgery how does their pit change things...Ive been like a electrical circuit board...

I have hypoglycemia AFTER meals now, too, (scary isn't it?) but did not have this problem in the past. I developed type 2 diabetes just before I was finally diagnosed with acromegaly and am now considered "prediabetic" for whatever that is worth. My A1C's come back in the normal range and have for a soid year, since within 3 months post surgery. I am not overly tall. My gripes are worse on the RIGHT side of my body except for the left shoulder and the left ventricle, but I don't know what's up with the rib cage as no one has given me any feedback about it, yet. For many years, a former primary care physician was alarmed about the size of my heart, but my current cardiologist claims it is not enlarged - it is proportional to my body, although the left ventricle IS enlarged. I have multiple conditions that lead to that enlargement - acromegaly, thalassmia, asthma.
There was a time I could eat the way you describe and remain thin, but now the calories gang up and attack me. I had lost an enormous amount of weight and it's finding me again. :-(

Oh, I just remembered, my hearing is compromised on the left side - the Mayo endo says it's the skull bones pressing something & nothing I can do :-( and the left hand did not respond to the carpal tunnel release, so I s'pose that relates to the left side of the body issue, too. It is numb so I ignore it except when it causes problems because of the numbness, but the shoulder doesn't let me forget it much. Maybe the vitamin D will help - I hope!

I'm taking Sandostatin LAR Depot 20 and it is helping some, but not enough. I am waiting to get my hands on the lab report to see what my IGF1 levels are but they are increasing and I had told my endo that I either need to go back to the daily injections or have a more frequent dosage. I don't think he paid attention because when the lab report came in a few days AFTER the blasted appointment he called me and asked me if I had forgotten to give myself the injection!!!!!!! No wonder I was feeling like crap. Now, i'd like to see just how high the IGF1 climbed.

IGF2 is not being tested for me.