Elevated IGF-1 levels and Microadenoma

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I have elevated IGF-1 and GH levels and a microadenoma (2,5 mm). But my OGTT came back normal. I've been experiencing some tingling and pulsating around my nose and of course my nose forehead and cheekbones are getting bigger. I was diagnosed with PCOS a couple months back by my phycisian who told me that I shouldn't be worried about acromegaly or the microadenoma because my prolactin levels are in normal range. I went to see a endo a week ago and my IGF-1 levels are still high. And I have low HDL. I'm really tired of having discomfort on my face. I'm almost 21 and my question is can I have acromegaly If my OGTT is normal? 

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  • Posted

    Acromegally has nothing to do with your prolactin levels, but it does with your growth hormone and IGF1.  It is not unusual for someone with Acromegally to get misdiagnosed or overlooked. I want to encourage you

    to continue on your fight for yourself.  What area of the country do you live and we can find you an endocrinologist in your area who knows Acromegally.  That is what you need to do right now.  Let me know and I'll try to help.  I believe EVERY person who has Acromegally has a story of their journey to a diagnosis.  It isn't easy but hopefully we can get you on the right path! 

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    • Posted

      Thank you. I live in toronto and its really hard to get a referral to several different endos or acromegaly specialist. For a long time my family phycians refused to give me a referral to an endo because my prolactin levels are normal. I had to go to a several walkin clinics to find a doctor that would give me a referral. They weren't even gonna check my pituitary if I hadn't told them that I was suspecting of acromegaly. I have an appointment with an endo that specializes in acromegaly. I really hope he doesn't dismiss me because my levels aren't abnormal enough. I never thought getting a diagnosis would be so tiring (emotionally) 

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    • Posted

      Again thank you, knowing that there are people out there going through similar things as me really means a lot. 
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    • Posted

      Seagway - this is what you can do.  There are at least two FaceBook Groups that you can check out.  One is Acromegally Girls-Only page and the other is Acromegally Support - there is also Acromegally Community - so three groups.  Obviously, if you're a guy you probably shouldn't join the first one! They are closed groups and you need to ask to join - not too difficult though.  The woman who is in charge of all this is Jill Sisco - an amazing woman who puts hours and hours in making sure that everyone who is searching for answers gets answers.  She may be able to give you the name of a dr. in Toronto or put you in contact with some Acro patients in your area.  You can ask any questions of this community and get help.  Hope to see you there; it is a GREAT group.  Believe me - in these groups everyone will understand where you are and understand how frustrating and tiring this journey is.  So hope this helps you.  

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