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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  • alecat67

    Newbies, don't be discouraged.

    4
    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...
  • faith-hope-joy

    Any psuedos out there

    0
    any insulin resistant people out there (psuedoacromegaly) just wondering how they found out you were insulin resistant was it a fasting insulin test or a hb1ac blood test ? Had my glucose and hb1ac and is normal .The fasting one has to be done at the hospital and I haven't heard nothing yet on when to go . Help in understanding this please , anyone thankyou 
  • Twomore

    Somatuline and surgery advice

    2
    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...
  • Hondo

    acromegaly and symptoms of arthritis

    1
     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

    0
    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...
  • faith-hope-joy

    yayyy !

    0
    Dr appointment went ace today new dr ,ace dr !has actually started to restore my faith in them . The last one I saw was so mean and cruel and accused me of making it up horrible horrible man .The sad thing is he wasn't the first to do that ! I was in tears even before this one cause I was sure I was doomed to be ignored again, (nearly didn't go ) but I wasn't !. It actually turns out that my...
  • 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

    0
    did the bypass eleminate all diabetes meds
  • faith-hope-joy

    Feel defeated

    0
    ok so went for follow up appointment with doctor arsehole again today my IgF1 was normal again I had to fight kick scream argue cry they're doing a oggt 'just for me " arse he still doesn't believe me got a fair amount of eye rolls and disbelieving looks when explaining symptoms As usual ! The other dr there said my symptoms are of gh excess so I can't possibly have these symptoms because my...
  • 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
  • zippy62

    Controlled but still dealing with headaches .....

    1
    After diagnosis of acromegaly I underwent transsphenoidal surgery.  My IGF1 levels nomalized for a while, but started to climb and I was started on medication (lanreotide and cabergoline).  At that time I began having headaches which were initially thought to be related to medication.  My doctors reviewed the options, and based on the location of the remnants of the tumor a second surgery was...
  • faith-hope-joy

    Pains in legs ?

    0
    I ve noticed of late I've been getting a lot of pains in my legs I noticed I would get this in my arms too a while back but but it was only occasional nothing much but lately I get loads of pains in my legs i get muscle weakness and pain in these areas to is this an acro thing ? I know weakness can be but shooting leg pains ? At night I sometimes get restless legs very annoying I had that with my...