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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Endocrine System
/ Acromegaly Support Group

Could I have acromegaly or am I crazy?

deleted_user
deleted_user
Ok where to start. I am 25 yrs young and have been experiencing strange symptoms since 16 or 17 yrs old. It started out with strange pains in my joints(knuckles, wrists, elbows) pain in my jaw and, for a few yrs now I've been feeling like I just look different. My nose and jaw are noticeably bigger to me, and my feet grew a size an a half! I have been to different doctors who just say I am a hypochondriac. I have only been tested once for the condition and was told my levels were normal but, the doctor already was looking past my complaints from the second we met (probably due to my age). I have recently been going to a therapist cause I am so depressed and just feel completely crazy due to no one listening. They diagnosed me with BDD Body Dysmorphic disorder. Which kind of makes sense, but I feel like my symptoms are definetly real. Its been going on for some time now and I know its more than just a delusion I have real symptoms! How can bdd explain my shoe size increasing and my strange joint pains and restless legs and tingling feet? I also can see the changes in pictures and, refuse to take pictures anymore. I don't know who I am anymore!
J0KEYJ
J0KEYJ
oh the frustration.I was in a terrible battle and many of us can relate when nobody is listening so biggest hugs .for myself I sat folded at my doctors with arms folded and with determination on my face said Im not moving theres something really wrong and DONT SAY ITS STRESS ..sorry in caps that was when I raised my voice because I had heard it loads of times.even though they listened to me still this sneaky assed conditon wasnt found for myself I had not even heard of it so they wouldnt even have thought about it..the medical profession ..Ive been on here four years now and theres no set pattern to this conditon sneaky and complex ..lots of people go endo route I didnt I went hormone there is a difference they dont treat acro but if good they can get you tests done of other things and something can be picked up that way simple blood test a full profile test of functions..also write everything down of symptoms ..the thing is with this conditon it mimics other things as age feet do grow.headaches stress etc etc..this conditon is not nice and the hormone specalist knew the hell I was in.you owe it to yourself to keep pushing to find out..
deleted_user
deleted_user
yes you should definitely be more firm with your doctors and insist they send away blood test for IGF-1 levels. Have you any other symptoms ?
deleted_user
deleted_user
Yes I have other symptoms but like Jokey said they can just be chalked up to lets say stress. Headaches, hair loss, no concentration. And i am sure there are more that I just think are not related. My biggest concern is the way I look. I always had a big nose and prominent chin but it was feminine and my face was small now I have such a huge forehead and wide jaw and thicker features. Everyone thinks i am crazy but, I know in my heart what I am experiencing is real, and real depressing!
spiegal
spiegal
IM SO SORRY YOU HAVE HAD SUCH A BAD TIME TRYING TO GET DIAGNOSED, THE QUICKER YOU GET TO A ENDO ETC, IF IT IS ACROMEGALY, YOU WILL BE ON MEDICATION, AND ALL THE SOFT TISSUE WILL GO DOWN, AND YOU WILL SEE A DIFFFERENCE, I WISH YOU A SPEEDY DIAGNOSIS, GOOD LUCK, YOU HAVE FOUND THE BEST SITE, AND SO MUCH HELP WILL BE AT YOUR FINGERTIPS.
deleted_user
deleted_user
You've come to the right place for support and information. The folks on here are a-mazing to say the least.
My personal suggestion is to ask for IGF-1 draw. Get a copy of the results (start a chart of your own and always get copies of ofc notes, tests, MRI CDs, etc).
Put together a group of pictures - one from age 15 then every 3 years. Try to get clear, head-on shots. Carry this with you to each dr visit.
Concentrate on the IGF-1 level. Not the OGTT that the dr will do if your IGF-1 is elevated (sugar/growth hormone supression test). Myself and several others have been able to pass this test due to our low (but abnormal) levels of IGF-1.
Also, keep a list of symptoms and take it with you to each dr visit.
Try to stay objective - document measurable changes. Bring an old pair of shoes to the endo visit. Keep taking head on pictures of yourself, no matter how strange and icky it may feel to do it.

If your IGF-1 is indeed elevated, insist on an MRI - 3T machine for best imagining.
******Don't give up until you feel that your questions have been answered!******
Suzannabanana
Suzannabanana
I had the same experience with my GP, but I went to an endo and she immediately confirmed my suspicions. Insist on what you need. If you do have acro, you'll learn very quickly that you have to be your own advocate, and in many cases your own researcher. Get IGF-1 and GH drawn, and if your doctor won't do it, go to someone else.

Good luck!
dejavu0820
dejavu0820
Reading this make me want to cry. This was me on old account. I am now 33 almost 34. I am still fighting for my diagnosis. The funny thing, well not funny at all, is after 7 years of a new symptom(lactating one side) is what got them to do a MRI. They found a growth, small microadenoma. But still no diagnosis! I have moved new doctors since this old old post, but no one seems to care. They found a growth and did several hormone tests, cortisol, prolactin, gh etc. Said all were fine. They are saying it's an inactive tumor. How is it inactive if I have symptoms? If my prolactin. Level is normal then why am I lactating? Nothing makes sense. They act like all the several symptoms I have are all non related to each other. I've been sent to different dr.s for different things. No one will listen. Since this old post, I now have extreme headaches, brain fog is much worse. I have been told I have asthma because I have wheezing, but the inhaler doesn't affect breathing test. Heart papatations...list goes on and on. I feel old beyond my years and ugly oh so ugly. I don't understand how all these symptoms and all levels are normal. The only test they have not done is the glucose test, but the endo she refuses to listen and she is the only one for miles where I live. I've have known for yrs I had a growth. And I know I have this condition. What can I Do? If it's not this what is it. Other condition that cause hands feet jaw etc to grow? I feel like a freak
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