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  • Elevated IGF-1 Level- Acromegaly?

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    Old 12-16-2010, 07:46 PM   #1
    MaureenK
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    Elevated IGF-1 Level- Acromegaly?

    My 20 year old daughter was diagnosed 2 years ago with a pituitary adenoma which had caused her prolactin levels to rise. She's been on medication which have brought those levels back to normal. We just got a call from her doctor that her IGF 1 level is elevated: it is 532 ( range should be 127-424). Last year her level was 385 (range for her chronological age at that time was 163-584).
    The doctor is concerned that my daughter may have acromegaly (aka gigantism) even though she's not having any physical symptoms. More tests are being scheduled.
    Is there anyone there with any experience with this disorder or IGF 1 elevation in general?
    I'm grateful for any information!

     
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    Old 12-20-2010, 06:31 AM   #2
    Dirkus
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    Re: Elevated IGF-1 Level- Acromegaly?

    Hi MaureenK

    I was diagnosed in 2002 with Acromegaly and had a endoscopioc transphenoidal surgery performed to remove a pituitary adenoma. This surgery is done through the nose. Acromegaly is a very rare disease and is thought to be hereditary. I was lucky to end up with a very good Specialist Physician that immediately noticed the signs. People that see you on a daily basis will not be able to notice the changes in your appearance. I have noticed the changes every time I looked in the mirror. My face looked swollen, my eyes puffy, my mouth and tongue became bigger, my shoe size changed from a size 10 to a size 13 and I always suffered from pain in the joints. Oh, and not to mention the mood swings. A typical sign is the "arrow pointed" finger tips. The only way to determine whether your daughter has a pituitary tumor is to have a MRI and growth hormone count done.

    My operation was successful and my bodily features is back to normal. I had to underwent jaw reconstruction and half my tongue cut away three years after the brain surgery, but otherwise, I look much better than before the surgery. People that saw me prior to the operation and then again months after the operation could not believe that it is the same person.

    All of the best to your daughter.

     
    Old 12-20-2010, 07:49 PM   #3
    MaureenK
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    Re: Elevated IGF-1 Level- Acromegaly?

    Thanks so much for replying. It's heartening to hear from someone who's been through this and is doing so well. I wish you continued good health!

     
    Old 01-01-2011, 03:00 PM   #4
    moommin
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    Re: Elevated IGF-1 Level- Acromegaly?

    Quote:
    Originally Posted by MaureenK View Post
    Thanks so much for replying. It's heartening to hear from someone who's been through this and is doing so well. I wish you continued good health!
    hi ,my husbunds also waiting for blood results to see if he has acromegaly,he has large hands feet nose tounge ,low testoterone,very bad pain in his back/joints,the hormone docto said he was an exciting case becouse he dont have tuma on his pit gland but MRI showed one on his maximus simus!! its been a long and hard strugle to get this far in his diagnosis ,his hands started to get bigger 30 years ago when we got married so if he has acromegaly he has had it a very long time ,i read that it is not heredaroty (spelling) but will speak to the doctor as my son has the same hands and feet as my husbunds !!! i will let u know what the results are,all the best maureen for your daughter shirley

     
    Old 01-01-2011, 05:05 PM   #5
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    Re: Elevated IGF-1 Level- Acromegaly?

    Thanks for the reply, Shirley. Are they going to remove your husband's tumor? We are going for a second opinion because my daughter's doctor wants to take a 'wait and see' approach since she doesn't yet have any physical changes from the acromegaly.
    I think it's a good idea to talk to the doctor about your son so that they can keep an eye on him.
    Warm regards,
    Maureen

     
    Old 01-02-2011, 04:52 AM   #6
    moommin
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    Re: Elevated IGF-1 Level- Acromegaly?

    Quote:
    Originally Posted by MaureenK View Post
    Thanks for the reply, Shirley. Are they going to remove your husband's tumor? We are going for a second opinion because my daughter's doctor wants to take a 'wait and see' approach since she doesn't yet have any physical changes from the acromegaly.
    I think it's a good idea to talk to the doctor about your son so that they can keep an eye on him.
    Warm regards,
    Maureen
    hi maureen ,its my husbund that has the problem,they said the tuma is in a dangerus place and that he could go blind or have menengitis,as its near to his eye and brain!!!!if we get the diagnosis that he has got acromegaly,then i think they will want to do somthing about the tuma,but we are going to ask if he can have a scan of his body first,becouse when all this started 30 years ago,he was having problems with his stomach,duadenal ulcer!!!we dont want them to touch his head if the problem could be in his stomach!!! its all iffs at the moment,will keep u informed,xxx

     
    Old 01-02-2011, 07:15 AM   #7
    moommin
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    Re: Elevated IGF-1 Level- Acromegaly?

    Quote:
    Originally Posted by MaureenK View Post
    Thanks for the reply, Shirley. Are they going to remove your husband's tumor? We are going for a second opinion because my daughter's doctor wants to take a 'wait and see' approach since she doesn't yet have any physical changes from the acromegaly.
    I think it's a good idea to talk to the doctor about your son so that they can keep an eye on him.
    Warm regards,
    Maureen

     
    Old 01-02-2011, 07:17 AM   #8
    moommin
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    Re: Elevated IGF-1 Level- Acromegaly?

    hi maureen,myson is 28,i will ask the doctor about him when we get results for my husbund ,all the best with your daughter ,keep in touch .shirley

     
    Old 01-26-2011, 06:08 PM   #9
    Jul2
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    Re: Elevated IGF-1 Level- Acromegaly?

    Quote:
    Originally Posted by MaureenK View Post
    My 20 year old daughter was diagnosed 2 years ago with a pituitary adenoma which had caused her prolactin levels to rise. She's been on medication which have brought those levels back to normal. We just got a call from her doctor that her IGF 1 level is elevated: it is 532 ( range should be 127-424). Last year her level was 385 (range for her chronological age at that time was 163-584).
    The doctor is concerned that my daughter may have acromegaly (aka gigantism) even though she's not having any physical symptoms. More tests are being scheduled.
    Is there anyone there with any experience with this disorder or IGF 1 elevation in general?
    I'm grateful for any information!
    You seem to have a doctor who's better than most. It can take years to diagnose this disease which, in my eyes, is 10 times worse than cancer. If your daughter isn't having any physical symptoms yet, it's super your doctor is monitoring it before she develops them, and to prevent her from developing them. Since this disease is rare, most doctors know almost nothing about it and don't do the proper testing, even when the signs are clearly obvious. Kudos to your doctor! He really is a prize!

     
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