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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  • 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...
  • 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...
  • 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...
  • 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...
  • Hi all,this info might help some one , also other members please advise me from your experience , to what to look for in the future.30 years female ( My wife)2015 april- went for eye check up due head ache suspecting vision problem.Doctor told that loss of peripheral vision referred to neuro opthomologistMay 7th- neuro opthomalagist did few vision tests and CT scan informed us that there is a...
  • I have noticed that I was always a little uneasy but lately it is affecting my daily activities.... I now know that it is anxiety with panic attacks.I thought I was weak and thought I should be able to just make it stop but .... nope - can't seem to will it away. I guess I wanted to "know" it is not just that I am weak - that something is causing it - so I did some research and found an...
  • 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.
  • I realise that this is a very delicate subject for many people but I am hoping someone can share their experience. I am now 65 and was diagnosed with acromegaly 12 years ago, had the op in Jan 2002 and lived a fairly normal life since then (yes, I am lucky, though I have worked hard to stay fit and healthy).I was diagnosed in '02 as having hypogonadism which I strongly disputed (and with sound...