Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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  • Hey Gang,It's been a while since I have posted on here... I've been having over the past 3 months alot of dizziness. It is a mind cloudness, a bit of off kilter vertigo type. I know that anxiety can cause dizziness, and I have been under stress due to some other issues, but nothing that would cause as much anxiety as to create this type of dizziness. The dizziness can come on when I have been...
  • alecat67

    Familial acromegaly link.

    1 story hit the BBC today.   While familial acromegaly may be rare looks like some of us may be the result of irish ancestry and the herediatry  passing on of the AIP gene over generations.  Myself and and mother have both had or have  acromegaly  and my maternal ancesrty is Irish.  We...
  • Hondo

    acromegaly and symptoms of arthritis

     I was diagnosed with acromegaly in 1982, had the tumor surgically removed the same year at New York University Hospital.I have been on bromocriptine since that time. I have had MRI evaluations of the pituitary roughly every 5 years, glucose tolerance and all the typical blood testing roughly annually during checks by my endocrinologists.In 2012, I developed pain all over my body, hips, legs,...
  • LAK

    somatuline deposit vs sandostatin lar

    I have been having Sandostatin lar shots for 11 years for my acro.  In the posts I have read here, I see that you talk about somatuline deposit.  I read that it is more exclusive to acro then sandostatin lar.  Has anyone changed from one to the other?  Did your hormon results improve?  It would be alot nicer getting shots 6-7 times a year then 12-13 especially if it works better.  
  • macmike

    Post acromegaly surgery

    Hi Everyone,My mum (72) yrs of age had her  pituitary tumor removed 4 months ago, and her recent MRI/blood test does indicate the surgery was a success. She has been on hydrocortisone since the surgery and has been asked to stop taking it as her hormones now seem to be stabilised.However, she has been very unwell complaining about being very tired and also her stomach hurting (burning...
  • Twomore

    Somatuline and surgery advice

    Hello, my first post. I started on somatuline in late December. I am debating if and when I will have surgery. I am a little hesitant to have surgery. The doctors make it sound like it is nothing. But fom what I have read it is a couple days in the hospital and a few weeks of "light duty", no heavy lifting. Does any body have experience with the recovery? How painful is it? The somatuline gives...
  • LAK

    Yawning and deep breaths

    I have acro and had my trans surgery in 2006 and cyberknife radiation in 2012.  I am still on Sandostatin Lar for my acro and small doses of Serotonin for mood swings.  Lately I have noticed that I tend to have to yawn alot and sometimes do not feel like I am getting enough oxygen even with deep breaths.  I do not have asma or allergies that I know of. Has anyone else expirienced this...
  • Twomore

    double vision

    Has anyone experianced Double vision from the tumor? I was reading a few medical journals and saw  few doctoes that mentioned this. For 20 plus ears no eye doctor ar endo or neurologyst has mentioned it. All ways the field vision issue. which i on't have but my Double vision has been a big issue as of the last 2-3 years. I also have other major eye issues so I just thought that it was paert of...
  • deleted_user

    alternative treatments?

    has anyone found any alternative or natural treatments that have improved their acromegaly, reduced their igf1, or helped their symptoms?I read in past posts a while back that someone was trying turmeric/curcumin to reduce igf1, and cited some research studies that it could help. was that successful?And I read the posts about reducing protein intake... the wife who wrote about going vegan...
  • roughtimes78

    My jaw/smile post surgery

    Hello there! I just joined this support group & am excited to find others like me. I had surgery on Feb 7th of this year (2017). I didn't really notice my jaw protruding too much before surgery but it definitely was there. After surgery it still is and may even be a little worse? My smile seems like a "joker" smile. I have a underbite (had this before surgery) and can't even open a ketchup packet...
  • alecat67

    Newbies, don't be discouraged.

    Hi  For anyone new joining and just being diagnosed there is light at the end of the tunnel!    Following surgery in November to remove a 12mm GH secreting pituitary tumour I had my main follow up's yesterday.   The inital presentation had been through heart failure leading to excessive high BP and fluid flooding my lungs, the  left ventricle  heart walls were extremely thickened meaning...
  • lookingforhope89

    Got my IGF-1 levels in..

    It's at 332. I'm still waiting for an appointment with an endo. Do these numbers mean it's acromegaly?
  • Mimi8

    Somatuline Depot and Heart Issues

    Has anyone experienced heart problems while on somatuline depot?  I have been on 90mg since October 2014.  Just recently I was diagnosed with sinus bradycardia (low pulse rate), mitral valve insufficiency and tricuspid valve insufficiency (my last cardio checkup was in May 2016 and the doc told me my heart which had been slightly enlarged before surgery in Feb. 2014 was back to normal size and...
  • lookingforhope89

    What should I expect?

    This might be long, but I'm freaking out and am scared.Long story short(ish).. I was diagnosed years ago with PCOS. So I have all the fun symptoms with that such as hair growth and so on.Dispite having PCOS I had a baby about 10 months ago. After having her my hair growth became way worse. So my doctor checked and my testosterone came back elevated. She ran more test and called me to tell me the...
  • Twomore

    mood issues

    Does any body have issues wit anxiety or deppresion from their Acromegaly? And was anything resolved from treatment. Does anyone have issues with thought processes or confusion and consentration?