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    Old 08-01-2005, 02:02 PM   #1
    30yearold
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    Question Just diagnosed with osteoporosis at 30

    I broke my tibia in two places and the second ortho I saw recommended a bone density test. My hip looked fine, but my spine shows osteopenia and my wrist shows osteoporosis (-2.7). My doctor referred me to an endocronologist to determine why my body isn't absorbing calcium the way it should be. So, I made an appointment but can't get in until September 15. Is this something I should be more concerned about or do you think I should just wait out the month wondering?
    Thanks for your replies.

    Last edited by 30yearold; 12-27-2005 at 10:54 AM.

     
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    Old 08-01-2005, 03:50 PM   #2
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    Re: Just diagnosed with osteoporsis at 30

    Hi 30yearold,

    Welcome to the boards.

    I too had gone thru this mess around a year ago at 40. I had some readings of Ė3.5 and Ė3.6. Some areas were fine though. I was forced to play the same waiting games as you and hated it. Right now the most important thing for you is to be very careful not to lift things, or fall and hurt yourself any more until they figure out what is causing this and find a treatment for you. You have a lot of tests to go thru soon and you will need to find patience in the meantime. Also for the time being I think I would stay away from anything that promotes bone loss if you already have a head start. Smoking, alcohol drinking, carbonated colaís or any drugs containing steroids or hormones. Have they put you on anything in the meantime like fosamax?

    Please keep us informed.

    Good luck and best wishes and prayers
    John

     
    Old 08-01-2005, 05:53 PM   #3
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    Re: Just diagnosed with osteoporsis at 30

    If you want to speed things up a bit try and get your primary care doctor to order tests that you can take to the specialist in Sept. He or she can find out which ones the specialist would give you to test for the calcium problem. My primary care ordered many tests and the Endocrinologist ordered a few more specific ones when my appointment came around about a month later. I would think that a primary care doctor could order medication for the next 6 weeks for you.

     
    Old 08-02-2005, 05:37 AM   #4
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    Re: Just diagnosed with osteoporsis at 30

    John,
    Thanks for your response. They have not done a thing at this point (other than to say I need to see an endocronologist).
    I'm going to attempt to call others today to see if I can get in sooner.
    I tend to be somewhat of a hypochondriac but am trying to hope for the best. A month is a long time to wait for any answer at all...
    Thanks again,
    Jen

     
    Old 08-02-2005, 05:40 AM   #5
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    Re: Just diagnosed with osteoporsis at 30

    Taape,
    I attempted to contact my doctor yesterday but I go the run around with a call back from the nurse. The great response I got was "the doctor said it was ok for you to wait until September". Let me tell you, that was very comforting. I'm not giving up yet though. I can't imagine waiting until September just sitting around wondering what the deal is. From the research I've done it appears the cause could be about one out of fifty different things...not very helpful.
    Thanks for your response. I'm very grateful for these boards to hear what others have gone through...
    Jen

     
    Old 08-02-2005, 07:41 AM   #6
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    Re: Just diagnosed with osteoporsis at 30

    Jen,

    I honestly understand your concern and went thru the same nonsense with my primary doctor so I asked for a copy of my density test and started searching for an endo and other specialists on my own. I think it may be fair to warn you that it might make your doc angry. I actually found someone in another healthcare group than theirs thru a friend who knew someone. I know one thing; they requested is copies of all reports and everything ahead of time.

    Good luck and keep us posted

    John

     
    Old 08-02-2005, 08:59 AM   #7
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    Re: Just diagnosed with osteoporsis at 30

    Thanks John,
    This doctor is such a waste of my time that it really doesn't bother me if I upset her. I think I've seen her twice in the five years she's been my primary. She's rarely available and really not much help. I guess this is just the push I needed to find a new one.
    The good news is that I have a copy of my Bone density test so I won't need to deal with my primary to get that info. to the endocronologist.
    I still can't believe this-30 years old and I already have it...
    Jen

    Quote:
    Originally Posted by JohnDiV
    Jen,

    I honestly understand your concern and went thru the same nonsense with my primary doctor so I asked for a copy of my density test and started searching for an endo and other specialists on my own. I think it may be fair to warn you that it might make your doc angry. I actually found someone in another healthcare group than theirs thru a friend who knew someone. I know one thing; they requested is copies of all reports and everything ahead of time.

    Good luck and keep us posted

    John

     
    Old 08-02-2005, 03:32 PM   #8
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    Re: Just diagnosed with osteoporsis at 30

    Quote:
    Originally Posted by 30yearold
    Taape,
    I attempted to contact my doctor yesterday but I go the run around with a call back from the nurse. The great response I got was "the doctor said it was ok for you to wait until September". Let me tell you, that was very comforting. I'm not giving up yet though. I can't imagine waiting until September just sitting around wondering what the deal is. From the research I've done it appears the cause could be about one out of fifty different things...not very helpful.
    Thanks for your response. I'm very grateful for these boards to hear what others have gone through...
    Jen
    When I got the results of my bone density scan and my gynocologist told me to see an endocrinologist, I had to wait over a month for the appointment. I was pretty freaked about that. The office manager told me to take Caltrate and not worry. She said, "You've had this for a long time, you won't break." I didn't find that very comforting but I waited. She did send me a prescription to have certain blood and urine tests that had to be done before the appointment so the endo had those results when I got there. I used the month to do internet research on osteoporosis.

    I'm now reading "The Myth Of Osteoporosis," recommended by Peregrine on these boards. It's very interesting and might be something to read before you go to the doctor so you can be informed and ask intelligent questions about treatment options. The book is pretty down on medication, so you take it for what it's worth. I haven't finished it yet, but I sort of wish I'd read it before I went to the doctor. It would have made for some interesting conversation about treatment alternatives and I'd have been more prepared. As it is, I opted for Forteo, which does carry certain risks, mostly because it's not been on the market long, so long term side effects are unknown -- it did cause some rare bone cancers in rats (larger mammals tested didn't develop this cancer, according to my doctor) . Anyway, a number of us on this board have opted for this treatment to try to get a bump up in our bone density, but you can't use this drug for more than two years and most of us aren't sure what the next step will be -- Fosamax for some, but others have had a bad reaction to it. I've never tried it, so it's the great unknown. Best of luck to you. Don't panic, the month will pass quickly.

    Last edited by spinewhine; 08-02-2005 at 03:33 PM.

     
    Old 08-03-2005, 05:55 AM   #9
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    Re: Just diagnosed with osteoporsis at 30

    Thank you so much for the information! I'm off to Barnes and Noble.com to see if I can find the book. I'm pretty leary about the info I find online since much of it is pretty vague or makes me more paranoid. I really want to have children in the future and the more I read the more I worry about the underlying cause. I'm going to call the endo today to see if they can put me on a cancellation list or something so I can get in sooner.
    Thanks again!
    Jen

    Quote:
    Originally Posted by spinewhine
    When I got the results of my bone density scan and my gynocologist told me to see an endocrinologist, I had to wait over a month for the appointment. I was pretty freaked about that. The office manager told me to take Caltrate and not worry. She said, "You've had this for a long time, you won't break." I didn't find that very comforting but I waited. She did send me a prescription to have certain blood and urine tests that had to be done before the appointment so the endo had those results when I got there. I used the month to do internet research on osteoporosis.

    I'm now reading "The Myth Of Osteoporosis," recommended by Peregrine on these boards. It's very interesting and might be something to read before you go to the doctor so you can be informed and ask intelligent questions about treatment options. The book is pretty down on medication, so you take it for what it's worth. I haven't finished it yet, but I sort of wish I'd read it before I went to the doctor. It would have made for some interesting conversation about treatment alternatives and I'd have been more prepared. As it is, I opted for Forteo, which does carry certain risks, mostly because it's not been on the market long, so long term side effects are unknown -- it did cause some rare bone cancers in rats (larger mammals tested didn't develop this cancer, according to my doctor) . Anyway, a number of us on this board have opted for this treatment to try to get a bump up in our bone density, but you can't use this drug for more than two years and most of us aren't sure what the next step will be -- Fosamax for some, but others have had a bad reaction to it. I've never tried it, so it's the great unknown. Best of luck to you. Don't panic, the month will pass quickly.

     
    Old 08-07-2005, 10:35 PM   #10
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    Re: Just diagnosed with osteoporsis at 30

    I was also diagnosed with osteoporosis at a young age - 28.

    I had not been taking any steroid medications and my parathyroid functions came back normal. Perplexed, my doctors blamed the osteoporosis on my Depo-Provera injections. I quit the Depo shots and began taking Fosamax 70mg once weekly. After two years, there was very little improvement in my bone density.

    Several weeks ago, I finally went to see an endocrinologist and asked to be evaluated for Cushing's Syndrome. I felt that I was experiencing many of the symptoms associated with this condition, one of which is bone loss. Surprise - it turns out that I do, in fact, have Cushing's Syndrome. In my case, it's caused by a small, benign tumor on my pituitary gland. I'm in the process now of choosing a neurosurgeon to remove it.

    Nobody thought to test me for it before, because Cushing's is quite rare. In fact, my endocrinologist even raised an eyebrow at me when I told her that I thought I might have it. The funny thing is, I would never have learned of this condition if I had not been searching the internet one day and accidentally stumbled upon some information about it.

    Just thought I'd share my experience with you. If your doctor can find no other cause for your osteoporosis, you might want to consider asking him/her to evaluate you for Cushing's Syndrome. Best of luck.

    Last edited by Jade4u; 08-07-2005 at 10:39 PM.

     
    Old 08-08-2005, 07:16 AM   #11
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    Re: Just diagnosed with osteoporsis at 30

    28 and you already started Fosamax...I'm amazed a how many people are using drugs to treat this. Not that I wouldn't/won't, but it is a bit scary with the limited amount of research done on some of these drugs. Isn't fosomax for postmenopausal women?

    I went to urgent care last Thursday since I haven't been able to keep any food in my system for the past week and a half. They offered to do a colonoscopy but ended up doing some blood work instead. Apparently, my doctor is pretty busy since I'm still waiting for a call back on the results. The good news-they are testing for thyroid problems and things relating to my metabolism. So, I'm still waiting.

    I've done a bit of reading on cushings too. I seem to have the symptoms so I will be discussing this with the doctors too.

    I'm happy to hear you were able to find out what is causing it.

    Jen

    PS. If anyone is looking to track their own medical records better-you might want to look at purchasing Dr. Savards health record guide.

    Quote:
    Originally Posted by Jade4u
    I was also diagnosed with osteoporosis at a young age - 28.

    I had not been taking any steroid medications and my parathyroid functions came back normal. Perplexed, my doctors blamed the osteoporosis on my Depo-Provera injections. I quit the Depo shots and began taking Fosamax 70mg once weekly. After two years, there was very little improvement in my bone density.

    Several weeks ago, I finally went to see an endocrinologist and asked to be evaluated for Cushing's Syndrome. I felt that I was experiencing many of the symptoms associated with this condition, one of which is bone loss. Surprise - it turns out that I do, in fact, have Cushing's Syndrome. In my case, it's caused by a small, benign tumor on my pituitary gland. I'm in the process now of choosing a neurosurgeon to remove it.

    Nobody thought to test me for it before, because Cushing's is quite rare. In fact, my endocrinologist even raised an eyebrow at me when I told her that I thought I might have it. The funny thing is, I would never have learned of this condition if I had not been searching the internet one day and accidentally stumbled upon some information about it.

    Just thought I'd share my experience with you. If your doctor can find no other cause for your osteoporosis, you might want to consider asking him/her to evaluate you for Cushing's Syndrome. Best of luck.

     
    Old 08-09-2005, 06:10 AM   #12
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    Re: Just diagnosed with osteoporsis at 30

    What is amazing to me is how many younger people have it but how little you hear about it in the media or medical community.
    I considered making shirts that say "I have osteoporosis" on the front and "do you?" on the back. I bet a lot of people would be surprised that I have it and they are at possible risk too...

    Quote:
    Originally Posted by khayes
    Hi Jen,

    I am a 42 yr old male with Osteo and I too was shocked. I was on Actonel for a year but it didn't work. Now we are looking into the Forteo injections which also make me kind of nervous. No one knows why I have this....thats frustrating.

    Kevin

     
    Old 08-09-2005, 07:59 AM   #13
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    Re: Just diagnosed with osteoporsis at 30

    You know I hate to sound like a broken record here but I keep telling people that if you get this especially at a younger to middle age itís IMPORTANT to get a true diagnoses. If a doctor only wants to give you meds and later surgeries FIND A REAL DOC! I went thru this nonsense for too long and kept having more vertebrae breaks and nerve pain damage. If youíre unfortunate to have something as severely rare as I do it could also be nipping away at your vital organs too, which are a lot softer than bones. I just met a guy this week on this very site with two younger kids who has had back surgeries and now after many other problems 5 years later finally has been diagnosed with the same super rare disorder as me.

    Kevin I turn your age this week. I have been breaking bones in my spine for the past two years. They say menís most strongest bone mass is normally met by mid 30s. ďOnly a few years ago for us.Ē By that time we should grow enough bone to last for the rest of our lives with little or less growth. Men also grow much thicker bone mass then women naturally. You need to find an endocrinologist and or a hematologist and do some tests. Have they even done any? They should test your hormones first like testosterone, and men also have some estrogen. They also can test you for Cushingís like some here have said, too much Ph in the blood called acidosis a variety of auto immunes diseases and other things as well. Whatever you have is responding to drugs and mineral supplements like I was. At least for me the drugs couldnít keep up with it until I was treated for the other disorder first.

    (JUST MY OPINION)
    You know people, itís not my intention to upset, offend or scare anyone, but I would not trust just drugs or surgery to my bones especially my spine. The next time you slip and fall, get rear ended in a car or even pick up a bag of groceries may be the last time. GET REAL HARD ANSWERS WHY AND ASSUME NOTHING!

    Sincerely
    John

     
    Old 08-09-2005, 10:57 AM   #14
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    Re: Just diagnosed with osteoporsis at 30

    Kevin,

    I know what you mean. They need to be more aggressive too but at least they are looking still. They even tested me for that too and were sure it was that. Every time I turned around they were like O.K. this has to be it and the test would come back normal. Are they still working on you or just floating on the water waiting for the wind to push them to shore? This is not going away even on drugs for you. You need answers and should consider going elsewhere if you canít get them. I pestered the heck out of them with faxes even. They hated that. I was able to prove I sent letters and they were received with activity reports from the machine. Voice mails and phone messages donít give receipts.

    Good luck
    John

     
    Old 08-09-2005, 01:30 PM   #15
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    Re: Just diagnosed with osteoporsis at 30

    Great advice John! Right now my primary is acting like I'm pestering her (haven't been able to keep food in me for almost 2 weeks now). I finally insisted on a blood test. It came back normal so we're back to the "everything must be ok" attitude on the doctors side and waiting to see the endocrinologist. I love the fax idea!
    Jen

    Quote:
    Originally Posted by JohnDiV
    Kevin,

    I know what you mean. They need to be more aggressive too but at least they are looking still. They even tested me for that too and were sure it was that. Every time I turned around they were like O.K. this has to be it and the test would come back normal. Are they still working on you or just floating on the water waiting for the wind to push them to shore? This is not going away even on drugs for you. You need answers and should consider going elsewhere if you canít get them. I pestered the heck out of them with faxes even. They hated that. I was able to prove I sent letters and they were received with activity reports from the machine. Voice mails and phone messages donít give receipts.

    Good luck
    John

     
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