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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  • Twomore

    double vision

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    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...
  • Mariana1

    Need help

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    I'm a 62 year old mother of a 27 year old who was diagnosed with Acromegaly in August of 2016. My son's pituitary tumor was removed in September of last year. Despite every treatment, my son never really got back to his "normal life". He even lost his job as an engineer due to prolonged disability. In the past  6 months, his headaches and neck pain got so severe that he would inject himself with...
  • onephillygirl73

    Excessive Sweating with Odor

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    i recently had IGF1 bloodwork done and currently awaiting results. I strongly suspect acromegaly as I have many of the symptoms. One of the symptoms docs have not been able to figure out concerns sweat with odor. Twenty five years ago, the first summer after having my daughter I experience a horrible smell in humid weather. It happens within seconds of encountering humid temps. For example,...
  • VincentSummers

    Recurrence? Symptoms

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    Some years ago, I was diagnosed with the usual macroadenoma. It was partly removed, but the tumor was hard. After a bit, it was treated by UVA using the GammaKnife. Results were little less than spectacular. Essentially complete normalcy, with the exception of borderline low testosterone and slightly low growth hormone. Also a slight residual double-vision, which is part of what pointed to...
  • zippy62

    Difficult few months...

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    I just need to vent - my struggle with acro has been so overwhelming in the past 6 months that I am ready to give up.  I have never been so tired or struggled so hard to cope with poor memory and compromised thinking.  I've tried to push through the body aches, the headaches,  the endless medical tests and appointments and hope that some degree of normalcy will return.  The doctors try to be...
  • MadisonG555

    Do I appear to have acromegaly? Photos in journal

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    20 years old Female (symptoms for last 4 years)My mother has a pituitary tumor and I know it can be hereditary. I've been experiencing symptoms such as:Foot growth - have been a size 8 since puberty (for the last 8 years). Just within the last year or so my shoes I used to wear comfortably are hurting my toes. Got sized and I'm almost a size 9 now.Facial changes - Can't seem to get anyone to take...
  • NY127127

    Disappointing News

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    So for the first time post surgery I got some dissapointing news today.  I had surgery in March to remove a 1.5cm adenoma.  Surgery was fine and at three month MRI there was no visible tumor remnant.  My neuro declared me cured from his perspective.  Two weeks ago I had a my IGF-1 and GH retested.  Suppressed GH was 0.3, which is great.  Nonsupressed was 2.3, which isn't.  IGF-1 was 282...
  • roughtimes78

    My jaw/smile post surgery

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    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...
  • MadisonG555

    Please help me

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    Was wondering if there was anyone that has been diagnosed that could look at my last posting and photos in my journal and tell me if I have the facial changes and symptoms consistent with acromegaly? My endo won't listen to me or help me.. I know there's something wrong. It would be so helpful to just be able to talk to someone please. My friends and family look at me like I'm crazy when I try to...
  • lookingforhope89

    MRI...

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    Does anyone see a tumor?Long story short.. I was diagnosed in June with Acromegaly. I had elevated IGF-1, failed to suppress GH during glucose test, and radiologist confirmed a 2mm tumor on my pituitary gland.I was referred to Emory for surgery. I don't meet with the neurosurgeon until next week but I did meet with the Endocrinologist there. She believes I've been misdiagnosed. She says she...
  • 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.

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    http://www.bbc.co.uk/news/uk-northern-ireland-37622249?post_id=10206733081584838_10210782601140296This 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

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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,...
  • LAK

    somatuline deposit vs sandostatin lar

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    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

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    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...