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  • Severe Osteoporosis at 29?

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    Old 11-03-2011, 11:18 AM   #1
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    Unhappy Severe Osteoporosis at 29?

    Thanks in advance for any help/advice or to anyone who just simply takes the time to read this :-). I'm 29 yrs old, female and have been diagnosed with severe osteoporosis (t-score is -3.2). I have had pain in my bones and joints for almost 4 yrs now. Initially I had pain in my left groin area (thought I had just pulled a muscle), but when the pain didn't improve after a few weeks I decided to go to the doctor. I was diagnosed with adductor tendinitis given anti-inflammatory meds and told to come back if symptoms didn't improve. To make this as short as possible, I went back several times over the next few yrs. My pain went from my groin area to my hip to both hips to my lower back to eventually every joint/bone in my body hurt. About 2 yrs ago I had to start using a walking cane just to get around. At the beginning of this yr, I finally found a doc that would listen to me. I was sent for an MRI. It showed that I had a fracture in my left hip and a smaller fracture in my right hip. I was referred to a bone and back specialist in my area. I had to explain that I didn't fall, didn't have a vehicle accident, wasn't in an abusive relationship, etc. and that i had no clue how i ended up with two fractures, surgery was scheduled. I also had a Dexa scan done around this time. I had 3 small screws placed in my left hip. At the 6 wk check up, and after having an x-ray, it was decided that i needed another surgery (the screws would come out and a rod would instead be placed to help the fracture heal) since there was NO improvement in the fracture. While I'm in the hospital for the second surgery, I learned the results of the Dexa scan. (The doc didn't even bother to look at the results after he ordered it before i even had the first surgery, a specialist in the hospital is who told me after i kept having to insist that i did NOT know how i got the fracture in the first place). Anyways to sum it all up. I had bloodwork done a few weeks later Here's the results
    Vitamin D lower than 8 (i knew about this prior to the second surgery)
    PTH 83.2
    Calcium 9.4
    Phosphorous 1.9
    ALK (?) 34%
    I was diagnosed with secondary hyperparathyroidism and am scheduled to see an endocrinologist in January. As of today, I am still in crippling pain. I have to use a walker to get around. I fear that I will soon be bedridden. I have 2 small kids and that's been the most difficult thing for me through all of this. Anyone else been in my boat. Anyone know anything about hyperparathyroidism I've read EVERYTHING on and while all of my symptoms seem to be related to that (esp. already suffering from a fracture by severe osteoporosis at my age), i'm still not sure. I don't want to get my hopes up, because everytime I've done that in the past, I've just been let down. Thanks again to anyone who read this and maybe has some insight.

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    Old 11-03-2011, 11:35 AM   #2
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    Re: Severe Osteoporosis at 29?

    Hi, I am sorry you have been going through all of this! I myself was seeing a Endocrinologist for severe Osteoporosis. I even tried taking rx medications that didn't help and then went to self injections. After a year of injections, I had another bone density test. It was worse than the first one. My doctor just couldn't figure out why the bone loss. I was 45 at the time and now I'm 49. I became so very ill with weakness, high bp/heart rate, fatigue ect. At this point 18 months had passed with these horrible symtoms and no one could figure out why. I decided to change Endocrinologist. He review my records from my previous Endocrinologist and discovered that I had Hyperparathyroid disease and because of the lab department that had been used it read that the results were in "normal" range which wasn't the case. So to make a long story short, I had 3 1/2 overactive glands removed in Sept. of this year. There weren't any tumors just overactive glands. I was told that my Osteoporosis would get much much better on its own and that no other treatment would be necessary unless I wanted to take over the counter calcium on my own. So for you, I would seek a reputable Endocrinologist and a very experienced Surgeon! My parathyroid labs were always in the 80's like yours and my calcium was always in the 10-10.4 range. Good luck to you and don't give up!!!

    Old 11-03-2011, 02:20 PM   #3
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    Re: Severe Osteoporosis at 29?

    wow. It is so scary to entrust our care to doctors who often fail us. I was having a pity party about having severe osteroporosis at 59. However, you truly are so young. Thank goodness you are on the right road. I hope I follow suit and can find out what is going on too.
    Can you keep calling the endocrinologist's office to see if there are any cancellations so you can get in earlier? Good luck.

    Old 12-10-2011, 04:51 AM   #4
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    Re: Severe Osteoporosis at 29?

    I was diagnosed with osteoporosis at the age of 34. The year prior I had a full hysterectomy and removal of both ovaries due to endometriosis. I was already underweight, lactose intolerant, had been on thyroid meds for over twenty years, am small boned, and at the time smoked (I quit in 2006 the day I had my dexa scan and have stayed quit). I was quite physically active and didnt have any fractures or anything but I wanted to get a baseline dexa due to all my risk factors and at the time surgical menopause was a living nightmare and I couldnt find an hrt to help me feel human again (thank you Vivelle Dot for taking care of that problem!). I was shocked to get my scores...-3.2 in spine and -1.8 in hip. However, I refused to go on the Fosomax they wanted to put me on. The only prescription other than my hrt that I tried was Miacalcin which helped slightly but I was on the spray and started having sinus issues so stopped. I was able to gain weight, stop smoking, increase calcium and vitamin d intake, and started an exercise program and lifting weights. My scores improved in 2007 with -3.0 in spine and -1.4 in hip. Unfortunately I developed severe anorexia nervosa (still battling that to an extent but much better than where I was for a time) and my scores did go down slightly in my hip but stayed the same in my spine. I am trying to remedy the damage I have done.

    I don't have hyperparathyroidism but I have heard that once that problem is corrected you will see major improvements (I am taking medical courses in college for a Health Information Management program). The good news is that you now know the cause of your bone loss and can do something about it. You are also young and still have your natural hormones and your bones can recover more easily and still build yet. You are not destined for a life of crippling pain. Hang in there and can fighting for good medical care. I know how frustrating it is. I have been through so much with the medical establishment and being brushed aside. Had I not begged to have a baseline dexa I shudder to think where I would be today. Unfortunately I was hit by a mini van while on my bike in August (just a hard bump as she pulled out of a driveway without watching for pedestrians or bikes and bumped me but enough to send me skidding and jar my spine). My bike was damaged but the thing that is worse is this constant back pain now (and stupidly I let her off the hook when by all means I should have taken a police report as it was her fault and I am still paying for it but I was so shaken at the time). My lower back feels compressed and certain movements make it worse. I have been getting the run around too but am finally going to be able to get in to my regular doctor this week and I know she will have me do some tests. it is frustrating and scary to be dealing with this at our age. I see it's been a while since you posted. I really hope you are doing better. I will pray for you.

    Old 12-21-2011, 05:33 AM   #5
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    Re: Severe Osteoporosis at 29?

    Hi, can you share who your doctor is and where he practices? Thanks!

    Last edited by moderator2; 12-21-2011 at 06:36 AM.

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