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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  • agim

    Hunger

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    Can anyone tell me you still get hunger urges to eat like before surgery?
  • 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
  • faith-hope-joy

    Feel defeated

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    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 .....

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    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 ?

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    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...
  • faith-hope-joy

    turmeric curcumin ?

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    https://www.researchgate.net/profile/Marcelo_Perone2/publication/26785865_Curcumin_acts_as_anti-tumorigenic_and_hormone-suppressive_agent_in_murine_and_human_pituitary_tumour_cells_in_vitro_and_in_vivo/links/56abd07808ae19a3851156e7.pdfit was actually a friend that advised me about this , I'm sure some have you have tried this ,anyone had any positive results I am willing to try anything at all...
  • Vikki1570

    Anyone reply plss

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    Hai all i had surgery 1 year before nd mri revealed still tumor left of 1cm nd my endo have suggested cyber knife radiotheraphy have anyone been treated with that how long does it take to effect and fully cure and weight gain has been my major issue when it will settle or reduce??
  • faith-hope-joy

    Does cyclic acromegaly exist ??

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    Thoughts anyone ? If cyclic cushings exists,  why not cyclic acromegaly?  It's definitely  not widely accepted in the medical community but there has been medical journals/literature written about cyclic activity as a possibility. I have also noticed a few people in here posted a few years ago believing it's acromegaly they have despite normal IgF1, also people who have had tumors found maybe...
  • alecat67

    Post Operative success

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    Hi GuysJust spoke to my endocrinologist post my operation on 1 Nov, there is light at the end of the tunnel!!   Was diagnosed with severe heart damage in April which it was decided was caused by Acromegaly.  We then found a wee 12mm tumour on the pituitary.   The heart damage precluded operating early so was given sandostatin for 4 months prior to operation on 1 Nov.   During the...
  • https://ghr.nlm.nih.gov/condition/multiple-endocrine-neoplasiaHi Many of the posts on this forum appear to be from people wh have been experiencing a very different presentation of Acromegaly than myself.   I appear to have have had only simple growth hormone  based changes from my recently departed pituitary tumour;  bone structure change and soft tissue expansion, damaged heart etc.  None...
  • TallGirl

    GP complete about-face, confused parent (LONG)

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    My son went to his GP about two weeks ago for a referral to a sleep center. He's a night owl (as am I and my father) and he's been having trouble getting a night job. I suggested he might want his condition to be medically validated so he could report it to unemployment and they might start referring him to night jobs.* Age: 21* Sex: Male* Height: 6'1"* Weight: unsure, about 25 pounds overweight*...
  • alecat67

    Back at work

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    Had my surgery on 1 Nov and am back at work today.   Surgery at Western General in Edinbugh (Scotland),  transphenoidal, seems to have gone perfectly, tumour removed with no major resection of the pituitary required.  no external swelling or bruising, I  was on paracetamol only, for pain relief within a day. So far recovery appears to have gone perfectly, but still on highish doses of...
  • janetp

    Please help.

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    I am a 56-year-old woman who is the mother of 2 children ages 27 and 29. I am not sure where to start as I have had issues from the time I was a child. I look at the pictures now and it seems like i got big overnight and most pictures involve me eating. I have always had stomach pain and hives. I have not been tested for this disease but I'm 95% sure I have it and passed from my dad. So far...