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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  • Are constant fatigue, hair loss, significantly low stamina, mood swings, and memory issues common even 2 years after surgery?I am 25 now. I was diagnosed with a seemingly macro adenoma 2 years ago when I started having headaches and series of fevers. I went through a surgery, had it removed. Gradually my facial features changes slightly, although I didn't much notice a thinning of palm and feet...
  • flouncy

    celebs with acromegaly

    Thought it would be interstting to list a few celebs that have acromegaly. just to show us that we can go far in life with acromegaly. ive listed a few but if you know more add them.Kevyn Aucoin was a make-up artist and photographer for the celebs.andre(the giant)Ren Roussimoff was wwf wrestler. was 7ftRichard Kiel height star of bond movies (known as jaws) was 7 ft2ted cassidy played lurch in...
  • WindSnowLove

    Help!

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    Hello, I am a female, mid-20s, recently underwent a lot of tests after feeling exhausted with headaches and just not like myself. An MRI showed I have a slightly enlarged pituitary. However, contrast showed no tumors. After more testing, found I had a flagged IGF. Went to an endocrinologist and had my IGF flagged higher. Took the OGTT and suppressed it after 1 hour. However, my IGF was even...
  • peterpoland

    Acromegaly related acne

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    Does anyone with acro has or had in the past problems with skin and acne? If yes I would like to hear some advise, now I'm helpless, I have tried to fight to this with nutriction changes, dermatology treatment, and it gives very poor improvement.
  • Chili1978

    Muscle ache / weakness

    Hi all, I've always suffered with sore leg muscles, although it did ease off after surgery. However, over the last few months it has got progressively worse. Stretching really helps but I find this only temporarily relieves the pain. I find that after light exercise (even just mowing the lawn) it feels as though I've run a marathon. Has anybody tried any supplements, vitamins or found anything...
  • hi peeps just a quick question , are there any differences between pseudo and acromegaly I currently have all symptoms of acromegaly minus the skin tags but twice my igf-1 has come back normal . Only abnormality in blood were low testosterone and raised glucose on one occasion . I have the severe headaches concentration memory problems random vomiting worse in morning always have a strange pain...
  • jilsy

    Newly diagnosed and pretty confused!!!

    HiSo I've just joined this site, was diagnosed with acromegaly a month ago, I'm 29 now but Dr thought I'd had it for at least 10 years! Though it took a couple of months to get all the tests the endocrinologist said she knew what it was when she first saw me, I didn't even know it existed!! I'm now on cabergoline and hydrocortisone, which seem to be working and am also waiting to see a surgeon...
  • Hi everyone, I'm desperate for help my symptoms started about 5 years ago maybe six I really need advice on how to get help about this . I wil list please tell me what to do ! The start :: got a sudden severe headache got vey dizzy and vomited while this was happening I got very sudden growth of profuse downy hair all over face and body I mean it was coming in so fast i have never seen anything...
  • Nutrition and secretary tumoursThe above link appears to have some useful and informative information on nutrition while undergoing Octreotide therapy. Looks like supplements and fibre are the order of the day. V unhappy about possible need to cut back on martini's, wine beer and fatty foods. Guess it's good for me but you only live once, enjoy it.Life is more than just a read...
  • Trys

    New Forum Layout - what do you think?

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    I thought I'd log in to see what is happening on DailyStrength on the Acromegaly group, and see what posts there are.I'm now faced with a different layout I'm viewing it on a large screen, but it looks like it's been designed for use on a mobile or tablet instead (the fonts on the posts I view are massive). Yet, as I'm typing this message the font size is absolutely tiny.I see also that there is...
  • Hi Guys hope all well? After a couple of months treating the heart damage caused by my acromegaly we have now launched into the therapy for the acro. Looks like I need to get the heart some what better before a general anaesthetic. Started treatment with 28 day depo formats of octreotide, 5 days in all seems well except for some mild GI responses. All looking pretty damn good, although...
  • Chili1978

    Confused over test results

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    Hi all, I'm hoping that somebody might be able to shed some light here. Quick description of my history; diagnosed in Feb-14 with an 8mm tumor. Surgery in Jul-14, huge improvement of symptoms, surgeon thought he'd removed it all. Told I'd not need any medication as all levels within range. So far so good. I've had a number of OGTTs since and suppressed each time. I just completed another one...
  • derryacroeire

    Phone App

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    I came accross this APP a few weeks ago and have found it very useful so i thought i would share details about it for others to tryits free to download and useThe MyAcroManager Patient App, provided by Novartis Oncology is a tool for patients suffering from Acromegaly. The MyAcroManager app helps patients organize information specific to their disease state, track their tests results, track...
  • jonas20

    New case need advisors

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    I friends im portuguese and im a new case, things Start hapened (big face big hands big feets high voice) i do my first IGF test that marked 1100!! I do the brain exame and everything was ok, now im waiting..... What can BE? Thanks sorry the bad english..
  • tennisusan

    Acromegaly Treatment

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    Some of you are already aware but here is the link to our petition to get the oral octreotide decision reversed. This is all online. Remember one person can make a difference but a community can move mountains. Get this spread as far as possible. Let's show the FDA what power our community...