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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  • roughtimes78

    My jaw/smile post surgery

    1
    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...
  • Twomore

    Somatuline and surgery advice

    9
    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...
  • alecat67

    Newbies, don't be discouraged.

    7
    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..

    6
    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

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    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?

    2
    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

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    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?
  • Hondo

    acromegaly and symptoms of arthritis

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     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,...
  • Mimi8

    Alkaline Phosphatase Level High

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    Hi All -Had surgery February 2014 to remove 1.4 cm tumor.  Doc said MRI right after surgery looked like he got it all.  Growth hormone went back to normal and IGF-1 went down from 900s to 300s.  Then by August IGF-1 started to climb again. MRI showed residual tumor.  Doc wanted to start me on meds but I wanted to see if it would go back down.   Reached high 500s by October, so I started on...
  • agim

    Hunger

    1
    Can anyone tell me you still get hunger urges to eat like before surgery?
  • dailymail

    High IGF - but near normal suppression on OGGT\GH?

    3
    Hi there, just joined after reading an old post as I researched. In the past 2 years I have been experiencing uncharacteristic weight gain (nearly 7 kilos in the last 2 -3 years) despite no changes in my diet or general activity- also, crippling fatigue, increased hirsutism, sweating and extreme heat sensitivity, some carpal tunnel, anxiety like attacks (never had anxiety before) with tachycardia...
  • notfeelingthis

    Here I go again..

    3
    Never in a million years would I have thought I would be joing a support group. Not that I am above it, I just have always been able to handle whatever life has thrown at me. Feb 2015 I was first diganosed with Acromegaly , surgery was April 2015. In 2 weeks I will be having my second surgery due to it growing back and my IGF-1 levels extremely high again. This time seems so much harder then the...
  • agim

    Diabetes versus bypass or sleeve

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    Could someone please advise if sleeve process will eliminate diabetes ? Or should I go with bypass?
  • agim

    diabetes

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    did the bypass eleminate all diabetes meds
  • spiegal

    Plenedren

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    Hi, is anyone changed over to plenedren ? Better worse - my daughter has just been put on this and feels sooo much better than when on standard hydrocortisone